Friday, April 29, 2016

The Power of One Revisited

This post was originally was on September 12th, 2011 and I think it's a fitting way to cap off Autism Awareness Month. I have made some adjustments to make it apt for 2016...

Recently I have been a bit on the spoiled side with having four presentations in the past month with over 100 people in attendance as well as being on WDAF in Kansas City. I love bigger crowds, I'm not going to lie, but it wasn't until I was driving home late Friday night that I realized the power isn't in the bigger numbers.

My passion and mission is to raise as much awareness and understanding as possible and being able to do it 100 or more people at once is great. However, for there to be true understanding in this world we need to focus on the one and not the 100. What does this mean? All of us who are or know someone on the spectrum are advocates whether you know it or not. For those that attend my presentations, well, chances are they already are aware of autism. Out in the public though, this is where the power of one is.

Here's the thing; when a chance arises to inform a person about the spectrum you should take it. It is with the people who know nothing about the spectrum that need it the most. Speakers, like myself, can talk to big groups, but they already know of the spectrum. Granted, I'd like to think that I add some understanding in my presentations, but it is out in the general public that the ones we need to reach are.

I hope one day there is no need for a post like this, but I think back over the course of this year to times that I did state that I needed help and my plea fell on deaf ears. The quote I heard at the Salt Lake City airport will not soon be forgotten, "Sir, I don't know about autism and I have a flight I need to get ready."

Had I been in a better state I should have thrown it a quick thing of what autism is. This is the power of one; if we can get to as many people as possible then incidents like this might not happen. One person may not have the ability to make a situation perfect, but one person does have the ability to make a bad situation worse. And they may not mean to do so, but if they don't know about the autism spectrum and that those on the spectrum may need a little more help then they may choose the wrong words or actions without knowing it.

We're farther along than we were 12 years ago when I was first diagnosed. I no longer have to explain Asperger Syndrome, or explain that I didn't say the word "hamburger" (true story, happened twice) but there's still a mass out there that may know the word autism but have no idea what it is, what it looks like, and what to do about it.

So, with all that being so, we all have the power when the chance presents itself. Now I'm not asking for everyone to grab a bullhorn and drive up and down the roads in the middle of the night spreading autism awareness (that would be cool though, although I'm afraid it wouldn't end well) but when the chance pops up, say, at the Salt Lake City airport, you can give a quick 10-15 second explanation of autism. We don't need to go into extreme depth but rather just enough to open the door of what autism is.

Here's what I hope happens. If you're reading this you already know about the spectrum, but if we can harness the power of one then maybe that person who now understands will come across another person who doesn't know about the spectrum and then they share it and so on and so forth.

I'm sure something like this has been thought of before, written before, and spoken of before, but truly the power of one lies with us. We can make the difference to that one individual who is ignorant of the spectrum. One by one we can make that difference and get us closer to a world where everyone is aware.

Thursday, April 28, 2016

Anxiety on the Air in Kansas City

I was early, which is typical for me, when I arrived at the WDAF parking lot in Kansas City. The nerves were high as this was going to be my first live TV interview in over four years and it was in studio. It was scheduled for just 3.5 minutes and the night before I couldn’t sleep fearing what would take place in what otherwise would be the slimmest of time spans.

                The clock ticked ever onward and when it became 8:40 I figured it was close enough to the requested time of 8:45 so I got out of my car and slowly walked towards the door. Thankfully there was a sign that pointed which door to use if one were a morning show guest and I walked in and the receptionist greeted me and I all but locked up. She asked me my name and I had trouble getting out. This was not a good start to the morning and wasn’t helping the nerves!

                Why was I so nervous? I’ve given hundreds of presentations to large crowds and a TV studio has just a few people in it and one can’t actually see the audience at home, but the thing is this; at a presentation I have complete control and am captain of the ship. I’m not used to being in the role of just a responder to a question and not guiding the conversation which led to these questions; what would be asked? How would I respond? What talking points did I want to make sure I covered? Would I be more eloquent than I had been with the receptionist in simply stating my name?

                Several minutes passed and I was led into the green room. A common theme became people offering me a bottle of water. The receptionist did, the person that led me to the green room did, and every person that walked by did. I declined each time because had I drank anything I don’t think it would’ve stayed down. Yes, I was that nervous.

                In the green room the television, naturally, was tuned to Fox 4 WDAF and I was watching the show I was about to be on. This wasn’t calming for the nerves as I could see the arena I was about to enter. With each passing segment mine got closer and closer and eventually a stage manager came and got me and took me into the anchor’s studio. This interview would be done at the anchor’s desk which added to the pressure.

                Once inside the studio I was about three segments away and it was an odd feeling to be in there as you’d be surprised at how few people were in there. Actually, there was just the two anchors and the weather lady along with myself and the stage guy that was handling me and the microphone I’d be using. It wasn’t as busy of a place as I had witnessed at WGN four years ago and this somewhat lessened my nerves but when the main anchor, Nick Vasos, talked I realized he was live on the air and I was not more than six feet away. Call it a fish out of water, or any other overused line like that, I felt out of my league and was sure the resulting interview would be catastrophic in nature.

                The segment before me was now being aired and it was being shot in the adjoining studio so Nick started talking to me and asked me more about myself and what I did. He had some notes on me but quickly the conversation went off of that and I spoke about the schools I present to along with police and the fact I had been in the area just a few weeks prior in Chillicothe. As I mentioned that the female lead, I think her name was... I'm not sure actually, (it was a blur, I don’t remember) joined the conversation and quickly Nick turned to the camera and Linda joined in and they tossed it to the weather lady and Nick said, “You know what’s Chillicothe is known for, don’t you?” This transition was so quick and I didn’t know if it was appropriate to be talking during the weather report as the weather desk is just about 15 feet away, but I said, “no” and when he came back with, “It’s the home of” and in unison we said, “sliced bread” as there are reminders of that everywhere in that town.

                It was time of an ad break and somehow the conversation got to the fact that I flag for two national racing series and Nick asked me about that. It became so conversational that I forgot that I was about to be live to the entire KC metro area.

                The commercial was over and it was time. The anchors introduced me in a form that I don’t remember, and I was introduced and the camera panned out to where I was standing which was just to camera left. Thankfully I was right up against the anchor desk and I was able to put my hands on it. This was important because I feared ending up in the positional warfare, which I haven’t talked about in a while, but what that is, to put simply, is that I can end up in a state of not feeling comfortable with the way my body is in the space it’s in and I’ll constantly fidget trying to find the right posture, but being able to put my hands on the desk was relaxing.

                There had been a script and the two anchors had told me beforehand what questions would be asked but quickly we went off script which was relieving for me. I do better without a script as I will over-prepare and it became, quite simply, a conversation with two people and myself. If you watched, and I’ll put the link at the bottom, I never break the fourth wall to the audience which, in turn would break the fourth wall for myself, in that I never looked at the camera. Eye contact is difficult, but eye contact with the camera on live TV is even more difficult so I had to make my world smaller.

                I had no idea how I was doing and I made a quip about how I talked to my teacher’s about weather over and over at recess and the weather lady cracked up, which couldn’t be seen on TV, but she was laughing rather heartedly and I noticed the woman lead anchor nod which told me someone had told something in her ear which made me concerned because I feared I had done something wrong, but the questions kept going.

                Before I could process that it had begun it was over. I was told, on air, that I am “awesome” which was, well, I don’t feel like that and I just do what I do because it needs to be done but as I began to leave the studio both anchors told me I did a great job and as I walked past the control room I heard several shouts of, “great job!” Needless to say it went much better than when I had walked in and tried to simply tell the receptionist my name but there were several factors that got me to what you would’ve seen on screen. The first was that, at the start walking in, I wasn’t in my “Alias”. What this means was that I wasn’t Aaron the Autism Ambassador for Easter Seals Midwest but just a random guy. I didn’t get into my alias until Nick had the mini-conversation before the actual interview. That was a great warmup and when it became time to start I was fully in my alias as you’d see me in a presentation because that’s what it was. It wasn’t, to me, being aired to tens of thousands of people but rather I was giving a 5 minute presentation to two people that certainly appeared to have a genuine interest in what I was saying.

                As I left the studio my phone had e-mails, text messages, and messages on Facebook stating I did a good job. I wouldn’t have known because the tension was so high and the time flew so fast that I don’t remember much other than what I have written. I do know, however, I felt at ease and at home in that arena and I’m thankful for the chance to spread autism understanding on the air and I’m thankful to the anchors for making the experience a most memorable one… even if I don’t remember it entirely.


                To watch the interview and read the story the station wrote go to

Friday, April 22, 2016

Storm Anxiety

Another topic that has been recurring at presentations as of late has been anxiety and be it parents or teachers there seems to be a deep wondering as to why certain things can cause such a almost and up to including paralysis due to fear. This was my story when I was younger with weather.

When I was young there was no internet and there was no instant ability to see the radar or thunderstorm forecast. Take tis picture to the right; it's from and is from 2010 but I used it to illustrate what I would look for each day. Once an hour, back when The Weather Channel was just the weather, would have the thunderstorm forecast and if where I lived would be in the red zone I would become a person on the absolute edge of soul tearing fear.

What's the red zone? Why did this map have so much power in my life? I was almost deathly afraid of weather and the power it can have and within the red zone is the potential for severe storms and within severe storms comes tornadoes. During the school year, and if I were in the red zone, I would do everything I could NOT to be in school because had I been in school I would be unaware of how imminent the threat would be and the school didn't have a basement and the rule says be in the basement in a tornado therefore being in school was dangerous in my mind.

Where's the rational thought? Using pure statistics the odds of being hit by a tornado are 1 in 4.5 million! However, that doesn't matter in the mind of myself being on the autism spectrum. Before I continue I must state that, "if you've met one person with autism you've only met one person with autism" so what applies to me might not apply to the next. Anyway, even though the odds are to the improbable level that doesn't matter because it COULD happen. If something could happen that's all my brain needs to hyper-focus on it and once hyper-focus mode is initiated it's hard to break the thought train which led me to learn more about the subject which further led to more fear. This isn't to say that learning about something is bad, as if I could rationalize it all I'd have been fine, but if it could happen it WOULD happen and as with so many things on the autism spectrum whatever is at any given moment is the ONLY thing that matters.

 With the advent of the internet more maps are viewable and this map is current from weatherunderground and shows what the convective outlook is three days out. Why do I show this? I wonder how I would've handled this info when I was younger, say, nine years of age. I lived in Indy at the time and with this I'd have known there was no chance at storms three days out. But what if I'd have been in the enhanced or moderate area and I knew more than 24 hours out? Would this have amplified the fear, or gave me time to prepare?

Often times it's hard for others to understand our fears because, on paper, it is a valid fear. A strong tornado is a dangerous thing. A snake bite is a dangerous experience. Certain mushrooms can be fatal, and electricity can do some rather shocking things. All those can be dangerous but while most may take the danger as just a way of life a person on the autism spectrum can get hung up on it. It may become the only thing that matters and you, as a teacher of parent, may have to assure and reassure there is no imminent danger. Then, you've got to be prepared for a counterargument as we come up with, "well, what if this..." or, "what if that happens..." It can be a never ending circular conversation and again, unless you've experienced this type of anxiety it'd be hard for you to understand it.

Myself, my fear of storms have ebbed over the years. The red zone no longer dictates whether or not I'm going to leave the house on a day. Fears though could be anything, and could be at any age, and as I mentioned if it is there, and it could happen, it will be the only thing that matters. If using pure logic the danger is real, but using probabilities the chance is slim and I was told that many times but that didn't matter; it quite simply didn't matter.

If you're a parent or teacher reading this I know it must be tiring hearing the same worries and having to give the same reassurances day in and day out, but I know I needed it. I couldn't simply shove it out, I couldn't simply get over it, and yes time has made it easier, but back 20 years ago my life was ruled by just one map shown once an hour.

Thursday, April 21, 2016

Revisiting Chasing Normal

I firmly believe this is the trickiest thing I experience on a daily basis...

Last week as I was giving a presentation to a high school's senior class on Asperger's Syndrome I was asked a very important question, "Do things get better? Do things get easier?" I answered this question in an unique way, but it was the concepts I put forth in my answer that make for my blog post today.

In my answer I stated that, over time, things have indeed become easier. Why so? One of the things I have noticed, and for my loyal blog readers you have heard this line, is that when I see who I am NOT I forget who I AM. That line might be the deepest, most profound things I have ever said and I remind myself of it each and every day. I told the person who asked this question that even I fall into the trap and when I do I am, "chasing normal; whatever normal is."

Last month at another school I was asked why I was doing what I was doing. The more I think about it and the more events in the world unfold, I feel there is nothing more important I can be doing than what I am doing. Why? In my life there is no worse time than when I am chasing normal; I mean, is there anything more tragic than to want to be something that you can't be?

When answering the question last week I said I am 100% happy with myself 95% of the time. That other 5% is when I am wondering what it is like to be a part of the normal crowd; to fit in without having to think about every step, every word, and to have words come easily that aren't forced. It's in that 5% that I yearn for everything I am not. Who I am is lost within the storm that ensues.

So I have established that there are times I'm not happy. That's being human, right? Yes, but it's more pronounced for us on the autism spectrum. Now comes the question, why did I say what I am doing is the most important thing in the world I could be doing? Yeah, I'm getting to that answer.

I have to admit as I gave this answer about "chasing normal" and seeing just what I am not, I had to fight back the tears. At one point in time I paused to gather my thoughts and in this auditorium with just over 500 high school seniors in attendance the silence was at an eerie level. I was looking down at the stage trying to gather what I should say and as I looked up every person there was looking at me, waiting, wondering where my answer would go. I've had many of these types of moments, but at that moment it made every hardship, heartbreak, and disappointment worth it and here's why...

If those around us understand there will be more acceptance. If there is acceptance, then the possibility of fewer social disasters is present. If we make fewer social mistakes our willingness to be a part of whatever group we are in will rise. Our quirks may be understood; we won't be looked down upon; and when it is all said and done we may not chase normal as often as me have.

Look, I've said this so many times that, "Understanding is the foundation for hope." Without understanding our actions can easily be taken the wrong way and if this happens we will remember it for a long time. I know I fear making the same mistake. I think back to when I was in school and when a string of mistakes happened I withdrew. Why? If you failed at something, and then failed again, and you failed once more and you had no idea why you were failing would you continue attempting to do whatever it was that you were failing at? Probably not and this is the core of why we get frustrated which leads us to chasing normal.

Growing up I never thought I could change the world. All I wanted to do was be a race car driver. Helping people, making a difference, and serving the greater good never was a thought. My life didn't turn out the way I thought it would and I couldn't be happier because to be able to speak to the audiences I do and maybe create a higher level of acceptance, tolerance, and understanding is something that has to be done. I feel if there is a better level of understanding during the school years that will carry over later in life. I do hope my message creates a better understanding right then and there but I truly hope my words creates an everlasting impact. Those with Asperger's can lead a full, happy life, but if those around don't understand and the person ends up always chasing normal how can they ever become the person they were meant to be when they are chasing the myth known as normal?

Wednesday, April 20, 2016

Retelling The Tale of Terror on the 10th Tee Box

I have over 1,300 blog posts and I realize I have so many new readers and followers, First off thank you! Secondly, it can be hard to find posts that have more relevancy than others and yesterday I gave eight presentations at a school and a echoing theme was, "have you been bullied" and in school I don't think I was and if I had been I was oblivious. However, there was a time in June of 2013 that an incident happened that was akin to it and today I repost that story to show just how fast ignorance can turn a normal day into a nightmare...

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..."

Tuesday, April 19, 2016

Someone Somewhere

This was originally ran in 2011 and I don't know what it was, but yesterday I couldn't shake the concept of this blog so I felt it right to run it again...

Today someone, somewhere will get the news. Maybe it will be the person, maybe it will be the parents, but today someone, somewhere will get the news that they, or that their child, is on the autism spectrum.

It's almost a certain guarantee that someone, somewhere will hear this news. The rates of autism are growing and the current numbers, here in America, are that about 1 in 100 live births will be on the autism spectrum. In Missouri it's 1 in 84. That's more children than will be diagnosed with diabetes, AIDS, and pediatric cancer combined! (Numbers updated for 2016; 1 in 68 nationally, 1 in 63 in Missouri)

When someone, somewhere gets the news, I feel it is the most important day in their life because they can go down many roads. Will they find the information that I did? When I was diagnosed I did a search on the internet, this was back in 2003, and I found a website that said, "People on the spectrum will never have a job, won't have friends, and can not be happy." This was the first thing I read so I believed it. I mean, if it's on the web it must be true, right? Today, do a search on Google, and you will get 82,100,000 possible pages. Of these, sadly, someone, somewhere may find a page like I did. They are out there, be it from doctors who don't know the human potential, to people on the spectrum stating that it is impossible.

There is better way for a family or person if they can find the right information after hearing the news. For someone, somewhere the diagnosis does not have to end their life, as they knew it, on that day. Instead of reading the misinformation that's out there, I hope they instead see the potential and hopefully find a page about Temple Grandin, and maybe see the list of people in history that were, or suspected of being on the spectrum.

The autism community is growing each day as someone, somewhere gets the news. Whether it is someone like myself, or parents, the internet is a medium to find out what that means. Because of this, I feel we must try to keep our best foot forward. Not everyone is going to keep that word of hope in their vocabulary.

Keeping hope alive is critical. I lived 14 months without it and it was very tough. I got off to a bad start reading that garbage. Still, today, I hear stories all the time of people finding those bad pages, or even videos on YouTube professing that being on the spectrum is a one-way ticket to "nevers" and "won'ts". Just on Monday, my dad told me of a person he knows whose family is going through the same thing I did.

I have many passions regarding the autism spectrum and have talked to many different types of audiences, but I feel the most vital listener is the someone, somewhere, who today gets the news . Granted, I can't speak directly to them, but by raising the awareness and understanding across the board, perhaps, the number of people who know the facts will have a louder voice than the one's who say life is impossible.

Look, I know the diagnosis is not seen as a message of good news at the time. Also, there will be challenges and some things may be more difficult. However, everyone in their life will have challenges, won't they? If the person, or parents, believe those people on those web pages that say all is lost then someone, somewhere may just believe it and then the real tragedy begins.

Because of all this, we all share in the voice of reality. No one person is going to open everyone's eyes to this. I feel I'm doing my part with my presentations and blogs, but everyone has the chance to change one person's world. If you know that someone, somewhere has gotten that news today you can be their voice that could turn them away from the misinformation that is out there.

You may think I may have dehumanized the aspect of the spectrum by just referring to the new people by saying "someone, somewhere." But I phrased it like this for a reason because I see it as some"ONE" and for that "ONE" person, today, whether they hear "your son," "your daughter," or "you, yourself,  are on the autism spectrum," the stories they hear, or web pages they visit, may shape that "ONE" person's life forever.

Monday, April 18, 2016

One Seed

With the school year coming nearing the end I thought it right to repost this from August of last year...

So yesterday I was golfing at the Gordon Country Club and I was looking out to the west on the 7th tee on a blustery day watching the high, groomed grass dancing in the wind. I looked to the north and the land just wasn't as tended to and was just unkempt land. What a difference a little (or a lot) of work made and that got me thinking.

 I've talked so much about the potential a person on the autism spectrum can have. However, it probably isn't just going to happen and it needs to work very much like the land out here. If it weren't for the decades, maybe even a century's worth of work of the land out here in Western Nebraska there's a good chance, well, a 100% chance that the land would not be hospitable for much of anything. It's taken irrigation, proper ranching, and a constant eye to make sure the land and livestock are right.

 So why am I going on a talk about ranching and land? Potential. Someone, at some point in time, saw potential out here and now this community has a sustainable agriculture economy and if the agriculture goes away this town very well may go away. How does this relate to anything? It all goes back to potential.

 The school year is starting and once more teachers are going to have students with Aspergers. Some teachers have a difficult time handling these students thinking that they are obstinate or defiant while others will just let them be them without much guidance. And then there are those that are going to see the potential.

 It's fitting I'm writing this blog post in the midst of an agriculture community because I've been ending my presentation for years saying, "we live in a society where everyone wants everything to be perfect right now. When it comes to autism we can't look at it that way and rather we need to look at it like planting seeds; you've got to give it time to grow." That being so teachers have a great chance to plant the seeds to instill that potential that could be hidden underneath.

 I'm sure I'll play many more rounds of golf and I'm going to drive by many fields and there will be multiple things I see. Not being a farmer or rancher I won't really know what I'm seeing because some fields will be filled with cattle and grasslands perfect for food, then others will be crops that I can't name, and then there will be some fields that are seemingly empty. What's there? What's going on? From my vantage point it's empty, worthless land, but to the right farmer or rancher they may see the hidden potential in the land. That's the difference between knowing and not knowing and I can only hope that in this upcoming school year more and more teachers master the art of seeing potential because what may seem like an empty field may someday turn into the most beautiful of creations that all started with the planting of just one seed.

Thursday, April 14, 2016

The Circular Maze

Going back to Monday’s post about the stuck red light concept I want to add upon that. First off, I feel as if this is the best concept I’ve come up with since Kansas and my mom referred to it as the, “ultimate explanation of autism in concept form.” What does it all mean though? How does it influence what happens on a daily basis? To answer this I introduce walls.

To summarize the initial concept is this; you’re stuck at a red light in the dead of night but the light isn’t changing. It’s solid red but nary a soul is around and you eventually decide to run the light despite your brain telling you that you shouldn’t be doing it. This is what being on the spectrum is like in that what we have to do on a daily basis, even though it is needed to make progress, whether it is something major or something as minor as eye contact, the trepidations are strong. For this post I will talk about relationships/friendships.

My history of relationships has been, well, anything but stellar. Even when it comes to friendships I struggle. When asked at presentations if I have friends I say I do, but they aren’t in the traditional sense as most live at least 1,000 miles away and I know them via Xbox Live. Have we met? Yes. Have we talked in depth? Yes, but in terms of having a friend in my hometown? It’s been, um, it’s been a very long time. I don’t keep friends, I don’t know how, and part of the problem is the constant proverbial intersections that have to be crossed.

I’m constantly analyzing a game that can’t be quantified, classified, or scored, and yet I do. What is the criteria for a friend? Is the other person just being nice because they know I am on the spectrum? Do they even know? I know I know therefore they know? Wait, no? Yes? Imagine those questions happening on every occasion. Actually, they occur before, during, and after. It never ends and each time I make a decision to say hello, or not, or to avoid, or to not, it’s the same stress as crossing a red light in the dead of night.

Now when it comes to relationships, and I have been getting a lot of questions about relationships on my author page on Facebook and I am very frank in that I am the worst person in the world to heed advice from in this realm. It seems the minimal amount of relationships or near relationships I’ve been in have all ended in a flaming heap of rubble that I’m lucky to get out of in one emotional piece. Why do I use such superlative language? This goes to walls, which I should’ve elaborated more on in the previous couple of paragraphs, but because the intersection game is so hard to go through I put up a lot of walls to not even allow navigation to an intersection. Think about it; if I’m seemingly uncaring, aloof, or overall stoic then those around me are going to leave me be. This is what I want outwardly but you can’t see the struggle going on inside. It’s a struggle because there is this part of me that wants to be the confident guy that has no problem speaking to anyone and everyone. That person that is fearless and can speak to any given person on a whim. I actually think, down deep, this is my true personality because, after all, how many people have a fear of public speaking and yet I do it with ease. And yet, this is where the walls come in.

Public speaking, and I apologize if it’s difficult for you, is easy for me. It really is, but there’s no emotional exchange in that arena. Walls are needed because the audience isn’t getting underneath all the protective layers I have so I don’t get put into situations of arriving at unwinnable intersections. Oh yes, there are those and those are the worst. In my 2nd book there will be a title called “Zugswang” which is a German word and is a chess concept which states that, when it is a player’s turn to move, there is no good move. No matter what move is made it will be the wrong one because every possible move will weaken the player’s position. This, in a way, is Asperger’s at its core because we may be put into situations where we must act and regardless of walls or red lights the end, regardless of what is chosen, will result in hardship.

After one of these hardship moment’s it is difficult to move on because there becomes a heightened sense of danger with future interactions with others. The walls become taller, the red lights become harder to cross, stagnation sets in, and the dastardly fail-set mindset takes hold. Fail-set mindset? This is the true enemy I face and what that is would be this; if one tries and fails one would often try again hoping to improve upon the first effort. However, for a person on the autism spectrum, we are often one and done. When we try, and fail, our different concept of time (past present and oblivion which states that “whatever is now is forever”) takes over and the ability to see that improvement is possible doesn’t exist. Is there progress? Yes, but I’ve never believed it even though I’m living proof it does.

Will these walls ever come down? Will crossing  against the light in the dead of night ever become easier? I’m not sure. I know that I still face this battle of wanting a major social life and yet being deathly afraid of having a major social life. It’s unique that what I want is what I also fear. It’s unique that what I’m comfortable with, and that is being alone, is what I don’t like. At times having Asperger’s is like being stuck in a circular maze and the only route, which is caused by all these tall walls, is a path of circular stagnation. Perhaps it’s the routine of it all, perhaps it’s the fear of what’s on the other side of these walls and the fear of what it would be like to have someone actually traverse the walls and get on the inside, but as with the previous posts this week there’s so rather deep stuff in this blog and if you haven’t lived this, or known a person that has, I don’t know if you can appreciate the duality of wanting and fearing and the sad bliss there is in isolation. If you do understand I hope that these words have explained it in a way that makes sense. I believe the walls can come down, I believe that there can be beautiful days ahead, but I also fear the vulnerability that comes along with having a friend, or a relationship, because control is lost. There’s control being stuck in a circular maze as one accepts their fate. I haven’t accepted mine yet and I want out and someday maybe this will happen, but as for now it seems the flaming heap of wreckage is the only outcome I know.

Wednesday, April 13, 2016

Death, Asperger’s and the Need to Inform

Going back to a school presentation I gave at some point in time I was asked one of the most direct and precise questions. As mentioned yesterday I love the arena of a school presentation as I truly have no idea what is going to be asked and I have to make sure I maintain my composure when a tricky question arises and at a recent presentation I had the second tensest moment of my career as an Autism Ambassador.

I know it gets old with me saying this, but I wish you all could see one of these school presentations and the empathetic and compassionate questions that get asked. If you want hope for the future go no further than seeing 400 5th graders wanting to know about the autism spectrum and their breadth of knowledge. In this presentation, though, I called upon a student and they asked, “Yes, would a person on the autism spectrum handle a death of a family member differently than a person not on the autism spectrum?” This would be a heavy question to be asked at any presentation be it to parents, law enforcement, but at this age group I knew my answer had to be perfect because I wouldn’t think questions regarding such a topic are common in a school.

In the flashes in my brain as I tried to formulate an answer I thought about deferring the question, but then I thought about the situation of the person that asked it. I didn’t know if they either had the diagnosis, realized they had the diagnosis, or had a family member that had the diagnosis. This made this such a slippery slope because I was also unaware of how many in the assembly had actually gone through this and the last thing I would want to do is upset anyone, but what if this; what if this person had either just learned from their parents or doctor that they had it or perhaps they connected the dots about and figured that they had it and what if sometime in the not so distant past there was a loss in the family and the reaction they had was, perhaps, a non-traditional response? If this were the case my answer had a lot riding on it because what if they had been mocked or ridiculed by a seemingly apparent lack of emotion and on top of that didn’t understand why they had the response they did? With my logic there was no dodging this question and it had to be answered in the most tactful and perfect way possible.

Have I mentioned I love school presentations? I do, but in the midst of a storm like this the love isn’t from the thrill of it but of the sheer importance of what my words mean. I deduced there was something of great gravity to this question as it was too perfect and too precise, but how to answer it? I played it out once again on what could lead to that question and I figured the best reason was that they had gone through it so I explained it this way…

I spoke to the whole group but my words were directed towards just one student when I said, “Can a person have a different reaction to a loss in a family? Most certainly and those not on the autism spectrum may go through the same thing, but for a person on the autism spectrum there may be an abundance of emotion or perhaps an apparent lack of emotion. Now here’s the thing; if you read enough literature on the matter or hear the news enough and hear a misguided expert you may read or hear it stated that ‘a person with Asperger’s has little to no emotions and simply doesn’t care.’ If you ever hear or read that know that this is false. We have all the emotions in the world but the catch is this. Our brains, from the part where we experience emotion to the part where we express it is much like a river except it’s completed clogged upstream and navigating from point A to the point where we can express it is difficult and sometimes impossible to navigate. With all that said can there be a different response? Most certainly yes, but emotions can be difficult to navigate and much more difficult to express so those around us think we don’t care when deep down we are hurting but have no idea how to tell anyone.”

With that answer given I could breathe again, but only just. I was on the brink of tears myself hoping my words had some merit and if my fears of why it were asked were true I hoped my words offered some solace and as the presentation wrapped up and I was driving home I couldn’t shake this question. I’ve lost count of how many times I’ve been asked, “My child has Asperger’s but they don’t know it. Should we tell them?” and I’ve always given a wishy-washy answer which I felt to be true. Each person is going to be at a different development stage and each person is going to take the news differently. Some won’t care, others will take it as a badge of honor, others may fear the label, but in it all, should a case happen like this question, and a person does seem emotionless in a time of a great loss, and those around ask, mock, or get angry at the behavior that person that has the diagnosis is going to be dealing with something much more than the loss itself. This isn’t to say the loss is going to be minimized; quite the contrary as for many days, weeks, months, or maybe even years the mourning process will never truly take place because that person is going to be stuck on the fact that they were told they were supposed to behave a certain way or have certain emotions when, in fact, they might have but didn’t show it. Now, if the diagnosis is confirmed and it is explained to that person and the family the whole sequence I described would play out much differently and perhaps a better support system could be in place as those around could just possibly understand that just because there is no outward emotions doesn’t mean the inside is hollow.

That student’s question is going to be with me for a long time. I’m going to play and replay it many times hoping I answered it rightly, but I also now I may give a stronger answer when asked, “should I tell my child…”

Tuesday, April 12, 2016

To Tell a Joke

At a school presentation recently I was asked a question I could not answer. This is odd because I’ve wiggled myself out of some tough spots when questions have been a little off base, but this one? This one had me stumped.

I love presenting to student bodies as it is the most dynamic and intimidating audience to present to. To be an effective presenter at this level one has to have absolutely no shame in self-deprecating humor and to have a confidence which doesn’t appear to be confidence. It’s hard to explain, but this, whatever it is, allows for a dialogue to happen in the questions and the final question of this presentation was the one that had me stumped.

It had been going great as of the nearly 500 students I had more than several dozen hands up wanting to ask a question. The principal gave me the notice that it was final question time and this 8th grader asked, “Yeah Aaron, you seem to be a hilarious guy and I was wondering if you could tell us a joke?” I froze, I stumbled, and I stared at him expressionless because I had no idea what to say and my brain was scrambling trying to tie a question a teacher had asked earlier.

Earlier in the presentation a question was asked about humor and if it’s possible that either A. a person on the autism can be funny or/and B. a person on the autism spectrum can understand or can give sarcasm? I gave a long answer to this essentially saying that, “if you’ve met one person with autism you’ve only met one person with autism” but I also mentioned that more and more actors are stating they are on the autism spectrum. I finished by saying humor often is a one-way street meaning I can state something and know that I meant it in a joking way but if someone I don’t know that well were to try the same thing it may not have the same effect. Bottom line is that expressive can be more than not better than receptive.

Okay, thinking about that wasn’t helping me answer this 8th grader’s question. The question at hand was to tell a joke. How hard could it be? I mean, I do tell plenty of jokes during my presentation but here’s another thing about being a good presenter; if one is scripted one must make seem as if it isn’t scripted. I think I do a great job at this (a script is going to form naturally when one has presented as many times as I have) but all my witty lines are in response to a story. I can have the proper voice inflection to stress a funny moment, or to make something go from funny to hilarious, but to just tell a joke? Where does one begin?

It was the final question which usually means I need to give an answer quickly but I remained there, silent, staring at the crowd. Dead air isn’t a good thing but I had nothing and then I realized that nothing was the answer. I finally had my answer and I thanked him for thinking that I was hilarious, but I then pointed out that all my witty comments had been story based because those things actually happened. Now, when it comes to a traditional joke, it’s abstract to me. I can tell a story that has a potentially funny outcome depending on how one looks at it but when it comes to chickens crossing a road or any other joke setup line I don’t know any nor do I think I could learn that skill set. And besides that, as I finished that answer, I don’t find traditional jokes to be funny at all but then I once again mentioned that the next person on the autism spectrum may be an excellent joke teller but as for me, well, my humor will remain in the realm of dry wit and reality.

Monday, April 11, 2016

To Run a Red Light

Yes, it is autism awareness month and as I’ve said many times I would much rather focus on understanding than awareness alone and today I want to make you aware of what it is like being in the middle of two worlds because that’s what I feel is a great way to describe Asperger’s.

I’m often aware of differences and I’ve done my best in life to try and blend in. This may play out in me not talking at all fearing that I’ll say the wrong thing, or maybe nodding in agreement in a conversation when I don’t understand a single word, nor care to, the other person is saying. If anything, to appear normal I have to counter what my body is telling me is right. Imagine that for a second; my body is highly defensive to its surroundings and I have many invisible walls to keep myself as safe as possible because the world is a scary place (autism spectrum or not). With that, however, when I allow what my body and brain tell me to do, say, to retreat or to avoid it often leads to as much of a difficulty as if I were to tackle something head on which is why, there are times, I have to deny what my body is telling me is right.

How difficult is all this? I’m a rules follower and rules weren’t meant to be broken. I have many personal rules as well, but this conflict that happens on a daily basis is all so tiring. On one hand my body tells me the outside world is random and scary but my job requires me to leave the safe confines of home. Think of it this way; imagine being at a stoplight in the dead of night with nary a soul around and you’ve got a red light. Time passes, a couple minutes, and still the light is steadfast it telling you to stop. Still, no cars or people are around and after five minutes you come to the conclusion that this stop light is broken. What do you do? At some point you are going to have to break the rule and you’ll check your mirror, you’ll look both directions for one to make sure no police officers are watching but secondly to make sure you aren’t going to get T-boned when you cross. After you make sure it’s safe you’ll decide to cross the intersection but you will be filled with dread and a sense of, “I shouldn’t really be doing this” but do it you must. Your foot goes down on the accelerator and as you reach the center of the intersection you’ll have a momentary sense of relief that you are finally back on your way but at the same time there will be this sinking guilt because you’ve never willingly ran a red light before. Sure, it was broken and sure no one else was there but you’ve just done something you’ve never done and something your brain has told you never to do.

What if this stoplight example happened every time? And what if it didn’t become easier to make that decision to cross against the light? This is the battle I face on an everyday basis. Sure, somethings aren’t all that major, but others are and the exhaustion that it can have on me can lead to situations where I decide I don’t even want to approach the proverbial intersection because I just have nothing left. Is it the coward’s way out? Unless you live with it you’d probably think so, but there are times I just can’t handle something.

This is why understanding is so vitally important because, in a perfect storm, I’m put in a lose-lose situation. I need to advance but the fear of having to go against what my brain is naturally telling is so great that I retreat. Perhaps this is too abstract, but if you live this you’ll understand the battle that this analogy has put forth.

Monday, April 4, 2016

To Feel An emotion

In March of 2014 I started writing a book that didn't get completed. Book writing and blog writing are two different styles and when I ran my "Top 10 of the first 1000 posts" I used that time to try and write a book. However, my book process is a long drawn out one and when blogging had to recommence I lost steam. Then, last year, I discovered that The Aspie Traveler is going to be a gigantic success, but nonetheless where I am right now, in terms of emotional state, can be summed up by what I wrote as chapter in the unfinished book and talks about emotions. Do note I make references to chapters which aren't published so my apologies on that...

I feel it right to go from talking about feeling alone to feeling an emotion because you need to understand the way emotions may work in us. Thinking on this I think that people not on the autism spectrum can relate to this and maybe everyone is like this in a way, but as one of my coworkers at Easter Seals Midwest says, “The only thing autism is, is human behavior to the extreme” and when it comes to emotions this is a great example.

            To feel an emotion, whatever emotion it may be, is going to be felt in an almost unfiltered fashion. I can remember talking to the doctor who wrote the endorsement in Finding Kansas and saying that, “You always ask what my emotions are from a scale 0-10 and I’m either at a 0 or a 10.” I also would contend that my happiness would stop at five, but that’s a story for another day. Anyway, whatever emotion is becomes the only emotion felt and since it is either going to be felt in an all or nothing manner whatever emotion is will most certainly be a major issue.

            Another thing I have just found out just recently is that my mind operates in a world of singularity meaning that only one emotion can really be felt at a time. Perhaps this is because of the issues in regards to processing, but one emotion being felt can drown out all others and become this massive behemoth of emotion racing down a hill with no ability to slowdown.

            Going back to the previous chapter (I’m doing a good job on keeping these emotions building on each other, at least I think I am and since I’ve got this singularity thing going on all I can say is “good luck” in convincing me otherwise) one of the reasons I was so elusive in speaking with psychologists and counselors was that I had to do everything in power to deny my emotions. Emotions come at me unfiltered and when triggered, or rather felt, they are so loud and powerful. I can remember in kindergarten being taught emotions that a person can be a little mad, or a little, or maybe just slightly mad and this always confused me because whatever emotion I was in the process of feeling I felt it to something I can only compare to terminal velocity. Therefore, I had to deny all things emotional or risk experiencing an emotion which may trigger an adrenal response, or might make thinking hard because my body’s response will be an all-out, unfiltered, cavalcade of emotions that can’t be processed and felt in a timely manner.

            Timely manner? What does that mean? Another reason that feeling an emotion is so difficult is the duration. An emotion isn’t simply felt, dealt with, and eventually tucked away and wrapped up like a problem on a 30 minute television sitcom. No, emotions are much more devious than that and they can stay with me. If I had a bad day at school that emotion would stay with me at home which meant that, if anything happened at home, I was already on edge so anything would set me off. At the time it would appear as if the smallest of things would send me in a teary fit, but the problem was I was still experiencing the emotion from earlier in the day and my ability to handle any situation was non-existent.

            One of the things that are on my PowerPoint I give to police officers is that, “people on the autism spectrum may ‘prefer to be alone.’” See the contrast here? The previous chapter I was speaking about this yearning to not be alone and yet, and I do this rather often, I prefer to be alone because if I am alone, by my own choice of course, if I am alone then the probabilities that I will have a social encounter that will illicit an emotional response is low and since feeling emotions is so difficult this means being alone is not that bad. The key thing here is being alone by my own choice because if I was wanting friends and failing then the emotional impact there was obvious, but other times I was perfectly content being by myself because I could do what I wanted, when I wanted, without the prospect of any social encounters.

            I want to go back and speak about the unfiltered part of this and the concept of time. When something bad happens to us it seems to stay with us longer. Many times I’ve heard from parents that will say their child with autism will have an aversion to someone because, “they hit me five years ago” as they would say. While that may be a truth most people have the ability to simply forgive and forget after, say, a few hours, but for a person with autism those emotions could always be at the forefront and any time that person is in their environment, even if they haven’t hit them in four years and eleven months it won’t matter because that person equates a fear response and once an emotion is felt it becomes the only thing felt.

            I experienced this in an odd way when I saw the movie “Captain Phillips.” If you don’t know the movie it was about a cargo ship that was hijacked by pirates off the coast of Somalia and it starred Tom Hanks. While this may not seem to have any relevance on my life, there was a scene in the movie late where one of the pirates tells Captain Phillips, “Don’t worry American, everything is going to be all right.” When I heard that line I instantly broke out into a cold sweat and began to shake. My breathing was labored and my mind went right back to the chapter “Kenya” in Finding Kansas as in my ordeal I had in Kisumu, Kenya a person who was holding us said the exact same words in the exact same accent.

            Maybe this event I had was an off-shoot of PTSD, but for a week I remained irritable, and just downright scared. Even though almost a decade had passed, the storm of emotions were being felt as if that even in Kenya was happening now. This is the problem with feeling an emotion; they’re too strong and they last too long.

            I’ve heard some misguided experts proclaim that, “people on the autism spectrum have no emotions and are almost, if not, incapable of felling emotions.” This couldn’t be further from the truth. Now, I must say, maybe there are some out there that are, but I believe, as is my case, that it isn’t feeling the emotion that is the problem (well, I guess technically it is a problem but not the one I’m going with on this point) but the true problem lies in expressing it. It can be confusing for teachers and parents trying to figure out why a meltdown, or tantrum occurred when something seemingly mundane happened, but the mundane event might not have been the problem but rather an event hours prior which is still lingering and festering which is the heart of the problem.

            In this chapter I don’t want to discourage the process of speaking about emotions and expressing it. This is something that is critical and I don’t know what I would do without the ability to express myself through writing. However, I hope what this post has done is given you a glimpse as to why we may be hesitant to express anything at all because, to feel an emotion, is to possibly creating an event in time that will be felt for minutes, hours, days, and maybe even months to come. And, when an emotion is there, the singular mind sets in and nothing else can be processed and my old phrase of, “whatever is now is forever” is felt and if the emotion is one of fear, angst, or something that will create anxiety I must say, why would I want to open the door on that?