Thursday, June 27, 2013

Terror On The 10th Tee Box

I love golf; I've had the ultimate high and some rather low lows but when it comes to lows nothing can compare to the incident of today.

I'm in Indy on what is technically a vacation with a drive to see my mom in Rapid City, South Dakota tomorrow. With the weather being ideal for golf I went out today to simply enjoy the sport and being outside. It's been a nice change of pace after six months of nothing but go. That, and I love golf.

All was going well minus the slow play which I would normally care about but I didn't mind as I was simply enjoying the sounds of the birds, the slow movement of the clouds, and the fact that I was shooting good. The story picks, though, on the 10th tee box.

The two groups in front of me stopped into the pro shop and I passed them and got to the 10th tee box. Right as I was teeing the ball up I was told to wait for the ranger's approval to go who was down the fairway. I waited, got the okay, and hit my best drive of the day. Right as I was about to drive away a voice behind me said to wait and to pair up with the threesome that I had passed. So I waited.

The three took to the tee box and they were certainly not my type to play with. Vulgar words, constant taunting of each other's golf game, and crude humor is not my idea of a relaxing day on the golf course. To be honest people like that intimidate me so things were looking bleak but then one of them told me, "As soon as we get past the hill we will let you play on. You probably wouldn't like playing with us anyways."

Two of them hit great tee shots and the third, well, the third tried. After the third player finally hit a shot that went further than 20 yards we were going to drive away when a voice behind us said wait. This was a new guy to this story and I heard him say, "I'm going to pair you guys up but why do you have three carts? You only need two. So you, you need to grab your clubs and put them on the cart with the guy with the blue shirt." The group protested and I sat there frozen. The thought of nine holes with these guys wasn't something I was looking forward to. I know I blogged earlier this week about the enjoyment I had playing with another golfer, but in that instance he wasn't vulgar and we each had a cart. In this instance it was sudden, in the middle of the round, and there seemed to be no choice.

My heart rate was up and they continued to protest when all of a sudden I felt the thud of a golf bag and him saying a curse word with, "I'm not going to be able to finish the round so how am I going to get back when I need to leave?" and with that line I turned around with a look of terror as the whole situation was sinking in.

I looked at the man who was issuing this order and I said, calmly, "I... I have a form of autism and socializing isn't my thing." I was proud of myself because this is something I normally wouldn't do. To stand up for one's self is one of the hardest things to do. However, I may have been proud but this man was having none of it as he said, "Look, I don't care. We don't have signs but a lot of places do that we reserve the right to pair you up and take your cart if need be."

Again I said, this time with a little bit more emphasis, "I... I... I have a form of autism and I truly don't want this. I don't do well in social situations like this." I was teetering on the edge now. I don't like confrontations and this was turning into one. At the race track I can easily deal with a situation like this as I'm an official with the rules as guidance and I understand people may get mad there. Here though, on the 10th tee box, I was sinking into a bit of despair. Things only got worse.

As I said I had autism for the 2nd time the men behind me mentioned they now wanted no part in playing with me but the man who was issuing the orders said, "We reserve the right and sometimes in life you've got to do things you do want to." I was now cornered with no way out. I wanted no part of the back nine but I had that guy's clubs on my cart. Perhaps this is the epitome of a "fight or flight" episode and my reaction was flight.

I said something aloud, something along the lines of, "I'm done" and started to get the balls and tees and I stepped out and as I got to my golf bag the man said, "You don't have to leave! What's so difficult?" What's so difficult? If only he could have felt the unfiltered pain and anguish I was experiencing at that moment. To be forced into a social situation and then to be given a miniature lecture in a condescending way is something that my body does not react well to. On top of that I very much tried to avoid the situation; I made it clear this wasn't going to work and yet he persisted.

After his question of, "What's so difficult" I collapsed. I could sugar coat this story, or say that I was stronger, but on the 10th tee box I was reduced to a hyper-ventilating piece of rubble. The trio that had protested now were confused, and I think a little scared and they simply moved on as if my existence was irrelevant. The man who had caused the ordeal walked away and there I was, alone and shaking.

Time lost it's meaning and I don't know how long I was there, but eventually a different guy came there and said, "Sir, are you okay?" I tried to answer, oh how I tried, but it took a while. I had all this pure fear, unguided anxiety, and severe self-hatred within me. Self-hatred? Then, and now as I write this, I don't know if there has ever been a point in time that I have hated myself more because, as he so eloquently put it, "What's so hard?"

It took a bit but I got an answer and I guess someone had told him I had said the word autism because he then said, out of nowhere, "Are you aware of Asperger's Syndrome?" to which I simply replied, "I've got it." A short conversation then ensued as he told me his grandson has it, and then another group behind me teed off, and I was told to play after them, if I could.

I drove out to my ball with a smoldering fire burning within me. What had been such a relaxing day had quickly turned into the biggest social nightmare since an episode at bowling two years ago. I did hit my 2nd shot but I had no love of the game left. Love of the game, well, I had no love left at all. I felt destroyed, irrelevant, and inferior to everyone else because, "What's so hard?"

There was no third shot. I picked up my ball and drove back towards the club house. I was trying my best to not show my emotions as all I wanted to do was to break down and cry. When I got to the club house the man who has a grandson with Asperger's found me and asked me if I was okay and I replied, "I don't really know." He then went on to say he grandson is the brightest in class but in any situation there is anything as so much representing a confrontation the result was much like the one I was having.

I got into my car and as I pulled out of the parking lot the dam that had been holding back my emotions burst. A furious anger at everything poured out. I felt defeated. I travel the country, I work huge racing events, I speak in front of thousands and one man on the 10th tee box derailed everything. The only thing I was thinking was, "How can anyone without Asperger's understand this?"

So here I am at my sister's now. The incident happened about 80 minutes ago and I'm still a whirlwind of sadness. I don't know how anyone could understand how something that seemed so minor could have such a major impact. I don't know how anyone could relate to the feelings I had in those moments when before and right at when I was told, "sometimes we have to do things we don't want to" and, "What's so hard?" Perhaps this is the pinnacle example of the difficulty living with Asperger's Syndrome. I look normal (I think) I act normal (I think) and I go out and do normal things (if you consider golf normal) but one social situation can cause a total derailment. How can anyone understand that? How can someone without it relate to it? Perhaps this is another reminder about why what I do with my writing and speaking is so important because, while those that have no awareness or understanding may ask, "What's so hard?" perhaps my reason for being on this Earth is to say, "What's so hard? Let me tell you..."

Wednesday, June 26, 2013

"Where do you..."

I got asked a profound question yesterday at dinner with friends here in Indy and that was, "Where do you think you'd be if you had not been diagnosed?" I gave a quick answer right away, but the question lingered in my brain and has led to this blog post. So where would I be? The easiest answer would be to say that I wouldn't be where I am now. But that's obvious and there's much more to it than that.

Leading up to my diagnosis I had an inkling that something was different. Well, I always knew that for the longest time but I didn't really think it was me but rather I thought it was everyone else. There was one defining moment about a month before I got diagnosed that I knew it wasn't everyone else. This story I have written before, but it's been a while. Anyway, I was in Florida and was at a hotel and across the parking lot there were three kids goofing around playing keep away of one of their hats. It was the epitome of being a kid and I realized something, as I was talking to my dad on the phone, that I had never done what those three kids were doing. I realized there was always something that kept me from just letting go and being free. Free of what? I was unsure, but I knew something was there.

A few weeks later I would have my diagnosis but let's say I didn't. What would be different? The first thing is that, at that time in the parking lot, I felt an immense anger at myself. "Why couldn't I do that?" I thought. From that thought I then went down the path of wondering why my amount of friends was continually lower than everyone else. The path was a long one with questions, "Why is eye contact hard? Why do others not have the same passion towards their interests? Why aren't other people so obsessive on being perfect? Why is socializing so difficult when others make it look so easy?"

When a person has questions and no answers as to why they are the way they are the trek to find answers can go many ways. For myself, I blamed myself. I blamed myself for everything. Maybe it was because I wasn't all that smart. Maybe it was because I was just weaker than everyone. Maybe it was because I was just too different; a difference that no one could understand but somehow it was all my fault.

The above paragraph might be one of the most open things I've ever written as well as important and I'm not talking about just for myself, but for others. I get asked often times, "Is it important to tell a person that they have Asperger's?" To answer that I have to think about the question last night on where I would be. I know I wouldn't be in a good place and last night I described it as, "If I had not been diagnosed I'm sure I would have imploded on myself." The knowledge that it wasn't my fault, the knowledge that there were others that have the same challenges as I do, and the knowledge that everyone is different was critical.

It's amazing what one bit of knowledge can do for a person. Sure, my introduction wasn't the best as I looked up what it meant on the Internet and got some awful information, but eventually I got to where I am today. I am comfortable with who I am and I realize my differences. Without that knowledge though I'd probably still be that perfectionist who couldn't realize why others didn't share the belief that everything has to be perfect and precise. I'd still be that person who would have no idea why you don't have the same passion towards interest as I do. And most of all, I'd still be that 20 year old in a parking lot in Florida looking out at the world wondering, "Why can't I do that?" instead of the person who is now, slowly, becoming part of this world we live in.

Tuesday, June 25, 2013

Understanding, One Swing at a Time

I guess you could say my summer vacation has begun as I'm in Indy waiting for Friday (or Thursday) when my nephew, sister, and I drive to see mom in Rapid City, SD. Yesterday I went to go play golf and at first I drove by the course right near my sister's and saw that they were rather busy so I decided not to play. Instead, I went to go get gas then went to the post office to ship off one of my books and DVD's a person had purchased. However, the call of 18 holes was calling so off I went.

Nothing happened the first four holes (except I did have my first ever bunker chip in. Go me!) but on the fifth the pace slowed down and the person behind me asked if he could join me. I said, "sure" unenthusiastically as I, well, I have Asperger's and socializing with those I don't know isn't my strong suit. My nerves showed right away as I hit two drives that went 15 yards, straight down, and into the water.

So I said I'm not all that enthusiastic about playing with those I don't know but it is something I am able to do now. Three years ago I would not golf if I thought something like that would happen and that's why I drove by the course first and decided not to play as it was the fear of socializing. However, I have learned the usual questions people ask in such a thing. Granted, I may never ask them in return, but I do know the process. The first question, "What's your name?" That's easy. The second, "What part of town are you from?" That's not so easy because I normally play golf away from Saint Louis so that leads to a fork where a person will either ask, "What are you doing up here?" wherever here may be or, "Got family in the area?" but almost always, regardless the track of questions, the fourth is, "What do you do?" referring to my job.

If I seem boring in the first three questions, and I probably do as I hate answering those questions, the excitement is shown once I share my job because, unlike three years ago, people seem to know what autism and Asperger Syndrome is and this man I played with yesterday, of all people, was a college professor who had just had his first student with Asperger's so he was familiar with it.

Hole after hole we talked about it, and the student he had and I was able to explain the behaviors as to why his student talked about one subject, and would refuse help when offered. It really was a spectacular conversation as I felt, truly, as if I were raising understanding one swing at a time. Sure, it was only one person but at the end of the day that's what matters, right? Here is a teacher at a college who knew about it, and had a student, but didn't fully understand it because that was never offered to him.

The holes went on and I went on a career best streak of 7 pars in 9 holes, but golf had taken a backseat to conversing. Well, I shouldn't say conversing because that would imply that I asked about him. He always addressed me by name and he had told me his name but I instantly forgot. Other personal elements he said were not remembered, but I remember everything about what I said regarding the autism spectrum. This within itself is part of it; it isn't that I was uncaring but rather there was just more important things to be said. I only have so much mental processing ability and once I get into my Kansas my ability to hear and record what you have to say diminishes.

As we neared 18 he said that in his previous work, which was electrical engineering (okay, I remember one thing) there are a few companies that are only seeking out people with Asperger's because "they're X%  faster" (I don't remember the exact percentage he said but it was north of 30) and "commit 97% fewer errors." Now don't quote me on those stats as that's what he said and I'm quoting him. After he said that though I came back with the national average of unemployment for those with Asperger's and he couldn't believe it. I explained the social issues, the fail set, and how difficult it is for us to get through the education system with all of our esteem and self-image intact.

As much as I complain about it I have to admit that when the final hole is done, and the goodbyes are said, I'm always sad. I realize the finality of the situation as chance are I will never see that person again and it was bigger yesterday because I met a teacher who wanted more information and who wanted to know more about how the brain of a person with Asperger's ticks. When I got into my car I tried to remember his name, and other personal information he shared, but it just wasn't there. This is normal which leads to the greater finality of saying goodbye. However, I do know this and that is the next time this professor has a student with Asperger's he's going to have a much better understanding than before.

Monday, June 24, 2013

A Trip to Moe's

The weekend was long working a race in North Carolina then a 12 hour car ride back to Indy broken up by a 6 hour sleeping period. I got back to Indy yesterday afternoon and I had one thing on my mind; to get back to my sister's before the start of the Indycar race (as if working races the past four days wasn't enough.)

I also had something on my mind and that was a comment on last Thursday's blog that said that I should have a tape recorder or something of the like to share each thought that passes. I did a variation of that back in 2010 when I shared a trip to Taco Bell. I was thinking on how to do something like that again as I drove up to my sister's (I had plenty of time to think as I hit EVERY light red.)

As I neared my sister's I looked to my right and there was a Moe's Southwestern Grill. I just discovered that place less than a month ago and each time I go there it's truly like heaven on Earth (I know where I'm going for lunch) but I also was in a time crunch because I wanted to watch the Indycar race. But, I had no eaten in over 15 hours. With that being so the Moe's won.

If you haven't been to a Moe's they do something odd as every employee shouts, "Welcome to Moe's!" each time someone walks in. For me, this is uncomfortable as I don't fully know how to respond and each step to the door creates just a tiny bit more apprehension.

This time I open the door and walk in but there's nothing as there is a moderate line. At this point in time I realize just how hungry I am and the hungrier I am I have noticed the more trouble I have in social situations.

There's an elderly couple in front of me and it's obvious it's there first time here as they are looking at the menu board. I stand a few feet behind them with no expression on my face looking down but I'm thinking "hurry hurry hurry..." There's also an intermittent loud noise that I can only explain as an ascending human made beep from a guy who is next to be served. "This is going to be an interesting experience" I tell myself.

The man of the elderly couple looks behind at me and asks, "Do you know what you want?" and I'm so nervous between the time, this couple, and the random noises this guy is making that I just sort of nod my head in a non-committal fashion so he says, "Then why don't you just go on ahead." Yes!

I'm now between the old couple and this 20 something guy who is still making random noises when he finally is helped by an employee he says, "Okay, I've never been here. What do you have?" The employee looked as frustrated as I felt and she explained everything and he asked questions about everything. A minute or so passed and a long line had now formed. This man also said a few things that were slightly inappropriate and I kept trying to retreat in place (hard to do) but I wanted to be anywhere but there.

The elderly couple was now having to get closer to me because the line was stretching out the door and they were inside my personal space (which is very large) and now I was feeling about as uncomfortable as possible with these two events going on. This guy ordering kept asking odd questions and then he looked towards me and made eye contact which forced me to quickly look elsewhere but out of the corner of my eye I saw him scan the line and he said, "Wow, I now feel like a jerk, look at the line! But don't worry folks, I'm from Idaho and we don't have these there."

I don't know what expression, exactly, I had on my face, and I don't know if I could mimic it if I tried, but it must have looked abysmal as the old man asked me, "Are you uncomfortable?" Uncomfortable? That was the understatement of the day. I was so uncomfortable I couldn't respond with words and not only that, for myself, being asked that question made things more uncomfortable as I thought I was doing a good job hiding my discomfort but obviously I wasn't.

To respond I once again just nodded my head and then I closed my eyes. The line was now pushing forward and the guy wanted to know how spicy each bit of food was and whether or not the lettuce and other food choices were organic. Closing my eyes didn't help, however, because the noise in the front was getting louder and louder with people. This is something that a person either notices or doesn't notice. Next time you are out, if you sort of want a glimpse at what challenges we on the spectrum might face, just pay attention to the exterior noise. I've had 'normal' people describe it as simple back noise that isn't registered but for me it is a constant noise as if a loud waterfall is raging and each drop of water is able to be heard.

Seconds were ticking away and I wanted to leave; to cut my losses and just leave. I opened my eyes toward the door but the amount of people I'd have to walk by would create social encounter after social encounter and I was done with the whole social aspect of this seemingly simple trip inside to get a burrito to go. Finally though the guy from Idaho had chosen his foods and was progressing down the line so I went into ordering mode.

If you ever hear me order I almost sound robotic or like a recording because I know what to say in as few words as possible to complete my order and this time I said it even faster as I wanted out of there.

The guy from Idaho was at the register as I got there and my nerves got on edge again. If you are wondering why he made me uncomfortable the reason as to that is this; I don't like random and from his movements to his shrew humor to his random noises, everything about this guy was random. Within random comes unpredictability and I can't predict when the situation is going to turn tense. And since I can't predict that I have to preemptively get tense just in case the situation turns that way. Also, since I can't fully see the social picture, I have to get that way because things may become tense (tense being people getting angry and the like) and I may not be aware of it.

Eventually, and that is a long eventually from the moment I walked in, I checked out and got my salsa and left. It was a trying experience and while for most people a simple trip inside an eatery might be simple, it doesn't take much to create a highly uncomfortable situation.

Thursday, June 20, 2013

An Open Letter to The Ignorant

I had a long car ride from Indianapolis to North Carolina yesterday and to pass the time I read up on the news. There was this one article autism and Asperger's Syndrome and I made the mistake of reading the comments. I think anyone knows that the comments area on anything news related is a hotbed of ignorance (not all the time) and on this I read comment after comment of pure ignorance and downright rudeness towards any and all on the autism spectrum. One comment read, "I'm so sick of hearing about autism and 1 in 88. It's all a fraud and just spoiled children." There were several more that were worse than that but as yesterday went on, and I flagged a race in Concord, NC, I became moved to write what I'm about to write which is an open letter to the ignorant...

Dear Ignorant,

I know you probably have a great time writing your comments on the internet. Perhaps you like just pushing buttons, or perhaps you truly believe what you write, but as a person on the autism spectrum I want to say your words hurt. No, your words don't just hurt as that doesn't put into scope just what your words means. Your words, as seemingly irrelevant as they are, are a complete slap in the face of everything that I am and is a ceiling to the potential I could reach and a complete mockery of the challenges I face.

Do you think it is a fraud? Honestly? I do my best at writing but I wish I could write in a way that would truly put you in my shoes. Can you imagine what it is like to hear everything and to be hyper-vigilant at all hours? Can you imagine what it is like to look at everyone else and wonder what normal feels like? To live life with a hint of envy carries with it a 50 pound sack of sadness on my shoulders. But you know what? Each day, somehow, I get up and I take on the world.

While I may, somehow, gather the courage to leave my front door and put myself on the line and risk social ridicule and social disasters, autism affects many more than just the person. When you were writing words did you, for just one second, think about the parents, brothers, sisters, and all extended family of those on the spectrum. What you so casually called a "fraud and a bunch of spoiled children" are living, breathing people that have no choice in who they are. We are what we are and by slapping us with your words you minimize who we are and the challenges we face.

A lot of us on the autism spectrum try in life and fail. This could be with friends, a job, or living independently, but we try. The moments we fail are a hazardous time because it is very easy for us to give up. Sure, oh ignorant one, you can call us weak, spoiled, or say we have a choice, but to us, should we fail one time, the end result will always be failure so we ask ourselves, "Why even try?" On top of that, when we read words like yours, we may just come to believe there is no hope because, with words as so bluntly put as yours, we are weak, defective, and a nuisance to the world.

I mentioned I wished I could write in a way that truly would let you, the ignorant, in on my life, feelings, and challenges. What is easy for others may be difficult for us. What comes naturally to you may not come so to us. So yes, I wish I could do one better actually; I wish I could let you in on my life for just one day. I wish you could experience a day in my life and the constant worry about my posture, my words, and my actions. I wish you could experience what it is like to fear each social encounter and the damages that may come from it. I wish you could experience what it is like to constantly think to the worst case scenario. I, above all else, wish you could experience the amount of negative self-talk my brain does because of all the other points I mentioned. It is a miracle I get through each day and I wish you could experience that. On second thought that might be too cruel because, through your ignorance, I see weakness and there are no words that can ever be written to give you a glimpse at the strength it takes to get through the day and the experience, for you the ignorant, would be beyond your comprehension. But hey, in your eyes it's just a myth, right? Just a bunch of spoiled children, right? I usually don't write in a condescending manner and I hope that autism ignorance becomes extinct, but the strength of us on the spectrum to tolerate our challenges, and of those by our parents to help guide us and support us when we need it is truly extraordinary. As I said, I don't think you'd last a day in my shoes so please, next time you feel the need to express your anger at hearing about "1 in 88" I hope you realize that us "ones in eighty-eight" have things a bit different and to deny us our right at that is to, in a way, extinguish part of our soul. If a person is okay with doing that then I have to be fully honest and say I'd hate for them to spend an hour in my world because truly, honestly, they would be no match for this "myth" known as the autism spectrum.

Wednesday, June 19, 2013

Champion: 1 Year Later

I can't believe it's been a year. It's been a year since I was awarded a Champion of Mental Health honor from the Missouri Department of Mental Health Foundation.

The whole banquet seems like yesterday; the nerves, the food, the pizza afterwards, and of course the video about me and the speech I gave,

To this day I still have trouble understanding how and why I got this honor. Perhaps it's just because I feel a bit down right now, but as for what I do, well, I do it because it has to be done. I don't remember what I said in my speech, and I'm not going to watch it, but I think I said I never started out doing this for any sort of accolades. This holds true to today; I just want to reach as many people as possible because I want to live in a world of understanding and I used to live in a world that didn't understand me and I didn't understand it.

Perhaps all this is why I was honored last year. I mentioned I have felt down, and there's several reasons for that, but a thought keeps creeping into my mind, "What if?" Yes, what if I didn't have Asperger's? Who would I be? Where would I be? Would I have made in racing? Oh, I could play the what if game for hours, but then at the end of those hours I always come to the conclusion that if I weren't on the autism spectrum all that I am would not be. I think that is a profound statement as I simply would not be me. All would be different. Some better, I'm sure, but some worse as well. I wouldn't be me and if I weren't me would I be speaking? Would I be an author? Would I be making an impact?

Yet one thing that is difficult for me is this knowing I have an impact yet feeling nothing about it. Okay, maybe I feel a small sense of pride during a presentation, but afterwards it is hard for me to fathom the fact that I was able to present in the first place and that I had any impact at all. Again, perhaps it is this which is why I was honored.

I'm sure next year, on this day, I will be just as confused as I was this year and last as to how and why I received such a prestigious honor, but nonetheless I'm going to just keep plugging away at doing whatever I can to help bring a much needed level of understanding, and an inside look, of Asperger's Syndrome.

Monday, June 17, 2013

The CC of Fear

It's obvious sentence time; communication can be hard for those on the autism spectrum. Okay, now that is out of the way let me expand on one of the reasons why this is.

I've also been hearing this a lot from parents and that is that one-on-one conversations can work great but if one extra person joins the conversation the whole are of conversing breaks down. Why is this? In my book Finding Kansas I believe I explained it by having the reader visualize a chess board. This is how I see a conversation; one person moves and the next person reacts. Now let's say a third player joins the game and the chess board becomes a triangular board but all the same rules applies. While that may sound cool think of all the possible moves for each other player in regards to your own.

In a conversation my brain is working like an overclocked computer trying to analyze everything; to put simply I'm thinking, "if I say A they'll say B and if they say B I'll say C unless they say D then I'll have to say E..." There is no off switch to this line of thought but there is one thing that will derail my confidence in anything I say and that is the CC.

For those that know e-mail the CC, or carbon copy, is how you can send an e-mail to a whole list of people and to me, this is the scariest of scariest things, especially in a conversation. The way my brain works, if I tell a person something I can't calculate the fact that they might go tell someone else. If I do think that then I'm having to play phantom chess, the board grows from two, to three, to maybe even more players but I can't see there moves right away. Also, in a future conversation, should the other person bring up what I said to the first person I will be caught off guard and then I will try and figure out what else they know and since there is no way to actually know my brain will be endlessly spinning and working trying to figure out the impossible.

This is one thing you have to watch out for as if too many instances of the "conversation circle" as I call it (circle because something said comes full circle and returns to the beginning) and I will hesitate and speaking. Now here's another important thing; you might have come to the conclusion that the stuff talked about within this blog post, as in something I say, might be something derogatory towards a person. This isn't the case; this full circle aggravation is done with anything. If I told person A that I went to a gas station and the pump acted funny and then that person told person B who then asked me about that incident that would be just as bad as anything.

What this all comes down to is processing. If I know what I've said in the order I've said it I can predict in my mind what is and is not known. If everything that is said is repeated to everyone else then I can't predict what may or may not be said. Perhaps this simply may look like a control issue, but it's more than that as my brain has to play the processing game of, "statement A=B unless C=D..." and if words are endlessly repeated then the mathematical possibilities are infinite and for a brain that has to be able to calculate the finite the infinite shuts the whole system down.

Friday, June 14, 2013

Beware Transitions

Okay, so I'm writing about something super obvious today and that is that transitions are difficult for those on the autism spectrum. However, there is something more to this than is normally spoken of and that is what I'm going to talk about today.

What do I call a transition? The way I'm using it today is going from one task to another. A task though, for me, could be a multi-hour or multi-day thing. When I am in the midst of something that I am full enjoying I may become oblivious to how I feel. This often happens at the race track when I am flagging as I won't realize I'm drinking enough water on a hot day because I am so focused on the task at hand, and enjoying it, that I don't realize just how bad my body is feeling.

This lack of feeling is common for myself when I am engulfed within one of my Kansas'. I look at this week as this has been the first light week I've had in a long time and I have felt absolutely flattened. Granted, I think most people that have had my schedule (80 days on the road so far this year) would be tired but for me it doesn't hit until there is a transition and when it hits it hits big.

I think back to the school years. I didn't get along with school all that well but every year come May or June when school was over I would become sad it was over and then as I transitioned into the new routine I would become extremely exhausted. Again, so long as whatever is going on continues I often won't realize just how tired I am. Usually though, unlike this, the task or activity will have to be liked to become oblivious as to how I feel.

One of the ways autism and special interests are explained (I call this Kansas) is that, "those on the autism spectrum will have an area of interest or knowledge that they will do to the exclusion of other things." This exclusion may also include physical and mental balance. It's not that I don't care about my body at the race track but rather I am so focused on the laps, the classes, the safety, and making sure my technique of flagging is perfect that I don't realize I'm dehydrated. I don't realize that I'm a little sore, or a little tired. If you'd like to see the definition of metal and physical fatigue all you'd have to do is look at my face about five minutes after the final race of a race day I work. "Are you okay?" is something I hear a dozen times but while I'm armed with my flags I feel nothing; it's once it's over that I begin to feel.

The concept holds true with traveling and presenting. Two days ago I gave a presentation on a day that I barely had enough energy to stand up, but once the presentation began I lost the feeling of being tired. Five minutes after the presentation I felt about as junky as possible.

So I just wanted to share this today in case you know a person on the spectrum that is, while in activity, full of energy and spunk but as soon as there is a transisition there is a major change. I feel this is important because this loss of energy and feeling of ill is sudden and without choice because we, ourselves, don't even know how tired or bad we felt while doing whatever it was we enjoyed doing.

Wednesday, June 12, 2013

My Most Memorable Race

In my book Finding Kansas there is a chapter about my first race. While that race was certainly memorable it is nothing compared to the race that is the most.

It was 1997 and I was in my third season of racing karts. This was a rebound season for me as I had a crash at the start of the 96 season and had spent the rest of the year timid behind the wheel which led to getting involved in crash after crash.

While the series was the Saint Louis Karting Association we were actually in West Quincy, Missouri due to the fact that our track, which I blogged about in 2011, was under water. This was fine by me as the TNT Kartway was a blast to drive with a banked final corner leading onto a nice straight.

This story picks up right before the main race. I was 14 years old at the time and also flagging all the classes I didn't race in. As the races before mine were ran I was getting nervous as I thought I had a legitimate chance at the race win, but my starting position didn't show it. In the first heat race I won, which was my first heat race win, but the 2nd heat race saw me getting taken out so I would be starting 7th of about 15.

It was time. I zipped up my racing suit, crossed the track, and got into my kart and waited. This is one thing I don't miss about racing; this time before a race when one has to try and tune everything out. The world around is moving, there's smell of cooking food in the air, but inside the helmet there's a world of complete isolation. As my dad started the engine he gave me his customary, "use your head" gesture.

We rolled out of the grid and onto the track in anticipation of 15 laps of racing. As I said, I loved this track but going from 7th to the front was going to be difficult but at least I would be starting on the inside.

The field came off of the final corner (it's the one in the bottom right of the photo and we ran counter clockwise) and a slow pace waiting... waiting... waiting... then there it was, GREEN! and we were racing into turn one.

Starts had intimidated me as it was on the first lap of a race the previous year I had my crash at the old Gateway race track, but I had to put that aside as I knew I could get to the front. 15 laps may sound like a lot, but it isn't when lap times are around 30 seconds. With that so I had to move up quickly to not allow the leaders to pull away.

I didn't get the start I wanted as the outside line got the jump. I wanted to blame the flagman, but it was a substitute so I couldn't be all that upset. Besides, driving angry is a one way ticket to a bad race.

At the end of lap one I was in 8th with 7th right in front of me. You wouldn't think it, but there's drafting in karting, and a lot of it! Headed into turn one I had an unexpected run and as he turned into the corner I aimed out and held my breath as I was attempting an outside pass on a flat out corner. "Aaron, what are you doing?" I thought to myself. What the picture of the track doesn't show is the knee-high curb (okay, it isn't that high) that is in the kink that is turn two. That meant if I didn't complete this pass the driver in front of me wouldn't know I was there and I'd run out of room and I'd probably get launched over that curb. That didn't happen though as I stayed on the gas and somehow pulled off the impossible and was now in 7th with 14 to go.

6th place was right in front of me as we headed into the final corner and once again I got a run down the straight and once again I went to the outside in turn one and once again I pulled off what I thought to be impossible. As fun as those passes were they were certainly scary moments, but I was on a mission and running the best race I had ever ran and it was only two of fifteen laps in.

My passes on 5th, and 4th were more conventional as I passed on the inside in braking zones and now I set my eyes on third as the race was now half over. I was losing heart, though, as first and second were long gone as it took me several laps to get around 5th and 4th.

With five to go I went for my move in turn one once again, on the outside, and made it work, but I had settled down and relegated myself to knowing that making up about five seconds in five laps was impossible. I may have been the fastest kart on track, but in the sport of karting a tenth of a second can be an eternity so five seconds was a margin that could not be overcome.

Of course, in the sport of racing anything can happen and it usually does. The leader and second place had been swapping the lead and in the north turn they made contact and both drivers spun way off the track. I saw the dust as I came out of turn one and as I got to turn three I counted two karts. It may have been by default, but now I was the race leader with less than five laps to go. Coming off the final corner on the same lap I glanced behind me and I had about a half second lead; all I had to do was to hit my marks, not push it, and I was on my way to my first win.

Across the line there were four laps to go, then three, then two and each lap passed as if a decade had passed. Time was crawling and I started hearing every bump, rattle, and I was sure something was going to go wrong. "Just keep it going, no mistakes!" I yelled as I headed to the final corner. The two karts which had been leading were back in the race but they were a good five seconds behind and I now had about a full second lead over second place.

Around the final corner and I could see the white flag in the air. This was it, the final lap; I was just 30 seconds from achieving a dream I had had since I was three and that was winning a race. I wasn't breathing as I went into turn one and my entire body was tense, but I hit my marks and I headed to turn two then the tricky turn three.

Headed into turn three I lifted off the gas in the same spot I had done but then a flash of something caught my eye flying over my head. I didn't know what it was and I tapped the brakes and turned into the corner. There was something odd though; silence. I stepped back on the gas but there was nothing and I was slowing down. "No! No! No!" I yelled. To my left flashed the second place kart whom I sure could not believe what fate had given him and at the same time I couldn't believe what cruel blow fate had dealt me.

I pulled off the track and I just sat there. I was just 20 seconds away from a win, and now I was seated in my kart, in the weeds. I would get up out of the kart just as the race winner went passed me with his one of his arms raised in celebration as this was his first win in what should have been my first win. About a minute later the retrieval vehicle came and the kart was loaded up and I then saw a huge hole in the engine which was the demise of my race.

Instead of riding back with the kart I walked towards the finish line as I still had to flag the remaining races. I took my time walking back as I wanted my eyes to dry first and I had to have composure to be able to do my job rightly.

When I got to the finish line I took the headset from the sub and stood in a very dejected manner. The track owner, who was also announcing on this day, came on the radio and said, "Aaron, I know you are probably dejected beyond belief right now. But look at it like this; anyone can win, but it isn't how you win that matters but rather it's how you take defeat. Especially defeat when so close to victory so keep your head high and move on."

What made this the most memorable race? The final race of the next season I would pick up a race win in a race that saw even more daring passing on my part so why isn't my first win the most memorable? It was the track owner's talk over the radio as I just had experienced the most ultimate gut punch fate could deal me in that race. It wasn't so much going out while leading at lap four, this was going out when I was so close that it was all but a guarantee. However in racing, and life, there are no guarantees and I think back often to that race as I recall the moves on the outside, the liberating feeling of being the first to see the white flag, and that big shiny piece of metal which was my engine blowing up. Yes, I think back to this often as anyone can win, but it's how one deals with adversity and challenges that shows a persons strength. A few minutes after his pep talk I was starting the next race with the same passion as I had on all the races prior and yeah, I truly wished I would have won, but isn't this what shapes who we are? And wow! that day certainly was a precursor to the events that follow in my life.

Tuesday, June 11, 2013

What if...

What if we lived in a world where there was full autism awareness and understanding? How much fuller would lives on and off the autism spectrum be?

What if we lived in a world where the autism spectrum is misunderstood and feared? How many challenges would be faced by those on and off the spectrum that wouldn't have to be?

What if we lived in a world where everyone on the autism spectrum got the services they needed? How many more people would be able to be just a little bit more self-sufficient and have more confidence?

What if we lived in a world where everyone on the autism spectrum fell through the cracks? How many more people would be unable to be self-sufficient and will eternally be dependant on everyone else?

What if we lived in a world where the words autism and Asperger's doesn't have a stigma associated with it? Would this better the awareness and understanding?

What if we lived in a world where the words autism and Asperger's will forever be stigmatized? Would this lead to more and more prejudice of the autism spectrum?

What if we lived in a world where teachers are made fully aware of Asperger's and are better equipped to give those students the education they need? How much easier would the education system be for students and teachers? What future revolutionary thinkers would make it out of the school system equipped for the world and life ahead full of hope?

What if we lived in a world where teachers were not given the resources they need to understand Asperger's? How much harder would it be for students and teachers? How much potential would be lost as those on the autism spectrum fall into the fail set and give up and lose hope?

What if we lived in a world that understood that, "If you've met one person with autism you've only met one person with autism"? Would this help all the points made above? Would this decrease the stigma and misunderstandings? Would this make the media give a better portrayal of autism than using the phrase, "all people with autism..."?

What if we lived in a world that had no understanding of, "If you've met one person with autism you've only met one person with autism? Would this help all the points above? Would this increase the stigma and misunderstandings? Would this give the media more power to state confidently that, "All people with autism..."?

What if you could make a difference?
What if you couldn't make a difference?

(Writer's note: The worlds above are starkly different but by just using slight changes of words. One little change of one word created a completely different world. Look at the last two sentences, just one change of word changes the world from hopeful to hopeless, but that's how I see awareness. Each single person we reach can, for them, be the difference between one of the paragraphs and the opposite and that difference, well, I think you know how big of a difference that would be.)

Friday, June 7, 2013

In the Right Light

A comment on yesterday's blog brought up a great point. In yesterday's blog I mentioned that I do everything I can do blend in and not really be noticed. The comment, however, mentioned the fact that most things in my life have me out there in the spotlight so what gives.

This is one of the paradoxes of Asperger's Syndrome in the way it plays out for me and also this is one of the trickiest things to understand. I explain this in my book using the chapter of "Alias" to explain it.

I used to talk about Alias a lot more on my blog so it's been a while so here's a refresher; I love rules, and with certain things I do there are very defined rules. Within these rules comes knowledge of what is expected of me and what could happen. Over time a role begins to develop and I call this Alias. At presentations I'm not really Aaron Likens, but rather I'm simply the Autism Ambassador for TouchPoint Autism Services. At race tracks I am the most visible official displaying the flags that keep order to the race. There isn't a brighter spotlight than that, but once again this is Alias in effect.

Now outside a presentation or a race track I don't have an Alias established. The rules, for me, are often unknown and the better I am at blending in, or being invisible, the safer I feel. Now, can you see why this can be confusing? The fact that I can speak to a thousand people at once without fear and yet walking into a store creates an anxiety to the core on whether or not a staff person is going to say, "Can I help you?"

It can be frustrating living this duality. On one hand certain things, like working at a hectic race track and having the gift of public speaking is easy, but other things like small talk and simple conversation can be a challenge. That being so, would I trade this to be normal? My answer is a firm "Most certainly not!" This won't be the answer each person with Asperger's would give, but I understand my gifts and I understand my challenges. My challenges have shaped me and have allowed me to become the person I am today. If you would have told me eight years ago that I would proclaim this I would have just shaken my head and told you "you just don't understand" but now I know it's the truth.

Thursday, June 6, 2013

Explaining Discomfort

There's a fear I have and it is fought each and every day. My goal in life is to fit in, be normal (whatever that means) and to just be. Having Asperger's, however, can sometimes create complications and while the complications are often the major story there is another story in play beneath the surface.

So often I talk about the complication itself but what I leave out is what happens the rest of the time. What does this mean? I've talked a lot about anxiety recently but there is another aspect I have omitted. It's also been a while since I stated this, but I am hyper-vigilant to my surroundings. This vigilance is always on and I am on constant alert for what could create an issue be it loud noises or random social encounters but this vigilance has more than one layer.

I'm now in Syracuse, New York and last night Kyle, the USAC interns, and myself went to this rather busy BBQ place. This alone worried me and yesterday when Kyle said that we were going to eat there my response was, "Is it loud?" Now what type of question is that? If someone is talking about a place to eat isn't the normal question, "is it good?" For a person on the autism spectrum my question wasn't that far out of the ordinary and here is why. I said my vigilance has two layers and one is protecting myself from highly uncomfortable situations but secondly it's to attempt avoiding situations where I might have to explain why I am uncomfortable.

Look, for those that don't have it, and don't have family that are on the autism spectrum, it's a tough thing to explain. Imagine this; let's say you have a horrible fear of going to the dentist and while you're on the chair with all the sounds of the drills and bright lights someone simply asks, "hey, what's wrong?" At that point in time are you going to be able to put into words that could be understood by the person who is asking that question?

So last night, at this BBQ place, we were seated outside because it was a perfect night and to my right was a row of motorcycles. Because of this I couldn't really enjoy the place, the atmosphere, or the conversation. This within itself is somewhat of a crime as I love being in new places because one never knows when they will ever be back in a certain place, but instead of enjoying this my eyes were glued to those walking on the sidewalk as I worried, no, obsessed with a fear to my soul that a person would step up and sit on one of these bikes. Why? There were about a dozen bikes and the furthest one away was at most 15 yards away and I hate loud noises.

As time progressed my fear grew and grew and it had two dimensions. One, obviously, was the discomfort of a starting motorcycle engine. I can remember when I was about six and my friend's dad started a motorcycle engine and I screamed for at least ten minutes. Back then no one knew why, but now I know and I was worried that, if a person started a bike engine, there would be some sort of reaction on my part. And if I had discomfort what would those seated with me say?

The last thing I want is to be noticed. When someone notices I'm having an issue of some sort two things normally happen. The first is "what's wrong?" which is very much like the situation I explained about the dentist and then the second part, if I explain at all, is "oh it isn't that bad." Perhaps saying this is an attempt to make me feel better somehow but it has the opposite effect. I do know, for you (or rather most people) that whatever is creating an issue for me is a non-issue for others but the fact of the matter is that it is an issue for me. Minimizing it doesn't help me. Saying it isn't that bad is, in a way, stating that I am weak. I understand that if I were normal (whatever that is) this noise, light, or whatever would be just another passing moment in life, but that's not the case for me.

Right before the food came out a person sat on a bike and I prepared, and there it was. I know I work at a race track but here's the thing; at a racetrack I have ear protection which truly minimizes the noise. I can tolerate it. Also, the sounds are constant. The issues with random motorcycles are that they are, well, loud but there is no predicting when or when not a rider is going to rev the engine to a fever pitch.

The noise was loud and I grimaced. At this point in time I want to be invisible. I don't want to be noticed, I don't want to be a burden; I just want to ride out this storm. Don't tell me that it isn't that loud because for you it isn't, but for me it is.

This is the reason anxiety can run deeper than what one might think. The episode itself is bad enough but also the fear of how those around me will react. Will they think less of me? Will they think I'm odd and if so, will they say it aloud? I had a purpose when I started this post by proclaiming that I just want to fit in and when something happens, say, a bunch of motorcycles firing up I am going to have an issue with it. All I did was grimaced and try to disconnect myself from the noise, but I did have a look of discomfort. Thankfully no one pointed this out or critiqued the situation and that was great. The last thing I wanted to do was to explain the situation as it was unfolding. Anxiety is bad enough without the fear of social ridicule.

Wednesday, June 5, 2013

The Road Ahead

Is it possible to feel so my passion towards something it creates sadness? That's sort of how I feel right now and I don't know why. It all started as I spent a 2nd day in Manhattan yesterday and every time I've been there I get inspired and once again it happened.

The feeling of being inspired though has no defined aim. I feel as if everything I've done is irrelevant and that I have to push myself harder to do more, become more, and reach more. I don't know what the root of this is but it's a feeling of complete restlessness.

This feeling grew and grew yesterday and as I walked the streets of Manhattan and strolled into Times Square it reached a sensation of maximum velocity. I remembered all the other times I made this journey going all the way back to 2006. I thought of how much I've changed and grown but at the same time I thought to the future.

Anytime I think of the future it is as if my brain scatters into a billion fragments as I try and piece out every possibility. With each of these thoughts the end was the same; where am I going?

I yearn for the answer as to where am I going. However, I don't think anyone can really know for sure where one's road in life will take them. I yearn for this, though, as I wonder if what I'm doing is enough. I don't know if I could do more, but if I could what would it be? I've been able to write decent blogs, finally, after a month or so of truly struggling. Does this mean I was pushing myself too hard?

All these thoughts flooded my head and I was just another person in New York lost within the business of their affairs. This is what I love about Manhattan; yeah, the excessive amount of honking by cabs is a bit much for me, but when it comes to the social aspect everyone really is on a deserted island in the midst of a crowded city. Except for people trying to get you on a tour bus, or trying to fill seats for a televised comedy show, the 4th wall is never broken. It's a beautifully orchestrated, chaotic system and I love it.

As much as I love the city itself I was not loving the tempest raging within me. I felt pride in what I've done but guilt in what I haven't done. But the question I kept asking was, "what more can I do?" Asking yourself that when there is no answer but having to have an answer leads in circular thought that can not end. That's where I was and that's where I am now as I write this.

Yesterday I wrote about what happened in New York four years ago and again, this time, my trip to New York has proved to be inspirational. This time though I'm not redefining myself but rather I need to figure out if what I'm doing is enough, or if I need to do more of it. Or, is this the trap that often plagues me in that I never take pride in what is, but rather I see what isn't?

From this blog I hope you can tell I'm somewhat confused. All I know is this; I want to keep doing what I'm doing. I think I need to be better at finding balance and maybe I do have it with this racing swing I'm on right now my writing has returned. My racing schedule this summer is rather intense, and I feel bad about the time I'm away, but at the same time this is what refuels me. This is what, perhaps, gives me the balance my body needs. I was wearing down, but now my strength is in the process of renewing. Instead of focusing on the next few days my mind now is trying to create some major and exciting prospects. So yes, while my trip to New York didn't redefine me this time I feel as if it added some confusing clarity.

Tuesday, June 4, 2013

New York: 4 Years Later

After events outside of my control I'm now in the New York City area and the timing couldn't have been better. My story of who I am began here just four years ago. I must say that the timing couldn't have been better because the past two weeks I've doubted my strengths, skills, and impacts but it was here, in New York, that I found my voice.

Four years ago I had a singular aim but was otherwise aimless. As my story goes, I wanted to be a race car driver and so many times I nearly reached that goal. Sure, I had written a book but it was self-published and had a very limited impact. This was frustrating and nonetheless I still had dreams of making big in racing.

On May 31st, 2009 my aunt and I attended the Autism Speaks 400 (that link goes to my aunt's blog about the race. She didn't have the best of times and has a humorous look at NASCAR, Delaware, and the day in general) and I thought during the entire race that I should have been out there on that race track. Why was I in the stands? Why wasn't I living my dream? Why was everything I wanted out of reach?

A couple days later I headed up here to New York City to meet a very influential person. If you've followed my blog a long time you might remember this video blog from last year that I did with her to thank her. What made her so influential was this; back when I first started putting my thoughts and feelings on paper my dad sent her my works and she said that it had merit. My dad informed me of this and every time I felt overwhelmed and wanted to give up I fought the urge and took my angst to my computer and let me emotions flow in the form of words and metaphors. Well, a few days after the race I did indeed meet her at Autism Speaks and the simple fact that I had a meeting in New York City gave me a feeling of something along the lines that maybe all this work I did to write was worth something.

Leading up to this meeting I had had several book signings and I heard the same story over and over. Parent after parent told me stories of doctors saying, "don't worry, you're child will outgrow it" and schools saying, "oh yeah, it's just a delay, and even if it is Asperger's, which it isn't, every child outgrows it by the age of 16." Did those stories mean anything when I first heard them? Nope, not at all. I was just impressed that someone might just buy my book. However, during my meeting, I was asked an amazing question. And what makes it so amazing was that I didn't take it literally. This doctor at Autism Speaks asked me, "Aaron, now that you have a book out do you still want to race?"

Did I still want to race? You bet I did! I was just a few days removed from the NASCAR race in Dover and just over a week removed from the Indy 500. My dream from the age of three was to race in either of those series. It was all that mattered in my life. However, when asked that question four years ago, I gave the most passionate answer I have ever stated up to that point in my life as I proclaimed that, "yes, I still want to race, but it's a new race now. The race is spread as much awareness and understanding as possible because there is so much hope out there only if the world understands us."

That was then and while in a way that seems like a lifetime ago I still remember the whole experience as if it happened two minutes ago. What started on that day was something I could never have imagined. Sure, I proclaimed my new race but I had no idea about how to do anything about it. I was one of the shyest, quietest, most reserved individual in the world and had no public speaking experience. None! slowly things developed and TouchPoint Autism Services offered me a job as a "Community Education Specialist." I don't think they, or I knew what this meant, exactly, but I honed my skills presenting to police officers and parents and since that day back four years ago I have given 390 presentations to 24,642 people.

I don't think anyone could have imagined the events of the past four years happening. I don't believe it myself. I still don't understand what I do or how I do it and unless I am in the midst of presenting I can't imagine myself being able to do it. Yet somehow this shy, meek, and overly humble person who was unable to give any sort of presentation while in school can now win over student bodies, doctors, and police officers with an ease that shouldn't be possible.

I began this post by saying the timing couldn't have been better as I was starting to doubt what I was doing. Then, as I blogged last week, I read a profound review of my book. That was vital because at last week's Indy 500 I, for the first time in a long time, yearned for that career of a race car driver. I feel bad, but I had the thought of, "what am I accomplishing?" I don't know what created this, whether it was exhaustion, or the fact that it was the most amazing race I've ever witnessed it, but whatever the case was I thought it. But now, I'm back to where my current life began. Between the multiple profound reviews that popped up on Amazon this past week, and returning to the genesis of my life as a speaker, I feel my passion returning with an untamed vigor. Instead of wondering "What am I accomplishing" I am now thinking, "How can I accomplish more? How can I reach more people? How can I help the world understand us more? How can I help those who need understanding the most?"

It's a wonderful feeling! The simple fact of being back here in New York City has rekindled that passion I first experienced four years ago. I don't know where I'll be in another four years, but if it's a repeat of the past four years I think I can honestly say that it truly is unimaginable.

Monday, June 3, 2013


I think Friday’s blog from last week was one of my finer posts. That’s odd as just a week ago I was contemplating whether or not I still had the ability to produce anything worthwhile. However, from the reviews I received on Amazon last week it fueled a writing explosion and I feel I’m back.

Anyway, I talked about anxiety on Friday and that is an often talked about topic as it can severely effect a good percentage of us on the autism spectrum. Today I want to talk about something that ties into anxiety but isn’t exactly. No, what I want to talk about today is strength.

Strength is not a word I use very much, but I want you to put yourself in the shoes of a person with Asperger’s. This can be hard, as I must use the line of, “If you’ve met one person with autism you’ve only met one person with autism.” What that means is each person is going to have his or her own challenges so there is no way I could cover every possible challenge so please don’t take this post as if I’m trying to speak for everyone.

With all that being said, once again, imagine being on the spectrum and all the potential challenges this world brings. For a person that has sensory issues to noises imagine the strength it takes to forge onward. In many of the schools I spoke to this year students opened up and stated their issues with the sounds of fluorescent lights. This is something that, if you’ve never noticed, would be 100% foreign, but right this second I want you to listen to your environment. If you are in an office I’m sure you’re hearing other employees, perhaps a printer, and maybe even the sound of overhead lighting. Now imagine being on the autism spectrum and having hyper-sensitive hearing. For many on the spectrum this is what daily life is like; a nonstop onslaught of sensory bombardment. While for some this can be too much and for others, often times, it can be overlooked on just how much inner strength it takes to simply go outside knowing that lights, sounds, or whatever the next unexpected sensory input could create the most uncomfortable of feelings.

Yes, I do firmly believe that our strength is something that is often overlooked. Strength is often measured in terms of physical prowess. Strength is often used in terms of horsepower for a car or bench pressing for an athlete. I mean, the athletic world is dominated by world records with the level of strength as the marker. With that being said, and in the world we live in, strength would most likely not be considered when doing something that, to most people, is simple, easy, and routine. But for us on the autism spectrum the seemingly simple experience of trying something new would be equal to making a run at a world record.

Strength is something that is hard to measure when it isn’t measureable. How can one measure something that isn’t in speed, weight, or height? I know I’ve gone on about that, but think about it. For us on the autism spectrum with all the sensory issues that may be there, and the anxiety that seems to follow us, I want you to try and measure the strength we may sometimes exhibit.

Fear is something that can follow us and sometimes strength can be a hard thing to come by. For some of us, including myself, the seemingly irrelevant fact of taking another route while in a car may create a level of alarming panic. After an event like this I may have the fear that every time thereafter the same situation (taking a different route) will happen. This is a feeling this is constant and can feel overwhelming. And yet, at least for myself, I will put myself out there without protest (okay… maybe a little protest.)

Why I hope I can convey here is that often times we lose track of not who or what we are but what we are not. I do this often. Lost in the whirlwind of life can be the simple fact that we have to be stronger to do what is easy for others. We have to be stronger to do something as simple as asking for assistance for something that may seem overly easy. We have to be stronger to get the strength to open up that front door and take on the wonderfully wild world we live in. Some of us are stronger than others and I firmly believe that the more we understand ourselves, and the more the world understands us, the greater our strength. One thing, going back to those world records I talked about, most world records are individual but for us on the autism spectrum we sometimes need a collective strength of those around us. It can be hard when things are going awry, but sometime, I hope, you can step back and see just how much strength we have.