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Thursday, December 18, 2014

The Invisible Battle

This has happened more times than I can recall, but twice in the past month-and-half and each time it does I don't fully know how to react. One instance occurred at a presentation and another during an event shortly before the SKUSA Supernats. What's the instance? It's odd, but it's almost worded the same and it's when someone utters the statement of, "but you don't look like you have Asperger's."

Before I continue let's evaluate the statement. First, and I must say Asperger's is sometimes substituted with the word autism, by the statement there is a defined "look" that a person is supposed to have per these statements. What would this look be? Does this mean a person with any diagnosis within the autism spectrum must have a look or therefore the diagnosis isn't valid?

Secondly, how am I supposed to take this comment? Is it intended to be a compliment. Another frequent line thrown my way is, "oh, I never would have known" which again, I think, is a compliment. However, at the same time this compliment gets a bit murky because, as I hear it, I'm "normal." Don't get me wrong; there's nothing wrong with whatever the myth of the week of what normal should be is, but telling me I don't look the part, or I don't act the part, or I don't speak the part, or whatever it is that is said my way instantly does two things. Firstly, it puts a great deal of pressure onto myself as if I'm on the witness stand and my being is on trial for, do I actually have it or is it just an act? This probably isn't the intended consequence of the statement, but that's how it makes me feel. Secondly, it discounts all the challenges that I go through.

The title of this post is, "the invisible battle" because often times that's what I feel living life with Asperger's is like. Perhaps the word silent could also fit in there somewhere because, when I'm told I don't look the part, what is lost is what life is really like. Again, I think it's a compliment, or an attempt and a nicety, but what it does it makes me feel awful about all the times that I have had problems, or sadness, or severe depression back in the days I loathed my diagnosis. However, I'm being told I don't look the part therefore I feel as if I should be normal and the challenges I face and daily anxieties I have shouldn't be there.

It seems odd that an attempted compliment could cause a response like this, but the exact wording of this often creates this. Maybe there's a better way of going about it. How? I'm not sure, but telling me I don't look the part discounts every bit of challenge I've faced. The other thing is it puts every person on the autism spectrum into a box as if we all are supposed to look one way, act one way, speak one way. It doesn't work this way and yet I know this and yet when I'm told these things I try to smile on the outside, and then decide if I need to prove to the person that my diagnosis is valid, and on the inside I am in a frazzled state of wanting to break down and cry.

The last thing I ever want to do is to defend my diagnosis. I don't know if anyone can appreciate what it is like trying to prove to someone that one's own diagnosis is true. I come across this a lot because, being a public speaker, I don't fit into this box and therefore I often get the, "you can't possibly have it!"  Maybe my solution should be to tell them to read my book; to let them know the years of anguish on wondering who I was and why I never fit in. Perhaps I could also say that my brain is a constant processing machine and there's never a point that I'm not planning or worrying about something. I could cover eye contact, or the countless other challenges I face that, to the outside observer, would be invisible.

This could be our greatest challenge in getting understanding for Asperger's because there is this preconceived notion of what we should look like, or act like. I know of one set of parents that were told their child couldn't have Asperger's because he "talks and gets good grades" which again, right there, discounts every challenge that the child and family faced.

People try to be polite, I understand that, but be mindful that if the compliment comes across as just 1% in regards to questioning the diagnosis or claiming it isn't there at all I don't take it as a compliment. Once again, I can't claim to speak for all on the autism spectrum. My experience with this may not be everyone else's, but for myself I feel as if my being, my challenges, and my tenacious fight to get to where I am, and who I am, today is lost when I'm told I don't look like I have it, or that flat out, "you clearly don't have it" and this is why the battle of having Asperger's will be invisible to many because the understanding just isn't there.
















Wednesday, December 17, 2014

Ranking Good

This is a continuation of the previous blog entry on The Problem With Good. In that post I talked about the issues of good and if something isn't hard then it can't possibly be good. There's another aspect to this and that is putting a value, or ranking good.

Ranking good? Again, as with the prior post, I'm not talking about good deeds or the difference between good and evil. This good is defined as in how good/great a personal event is. This is something I've struggled with my entire life. I've always had a great deal of difficulty understanding if something I did had any value and, if so, just how much. I don't think this chapter made it in my book, but I wrote a chapter entitled, "How do I Win?" and in it I talked about the struggle of not knowing the score of life. Think about it; if we use my "Game Theory" as well as "Cement Theory," and we look at the fact that I loved playing games at a young age there would've been ingrained in me a sense of accomplishment by some sort of tangible and visible system. However, in life, so rarely is there an occurrence where things are so black and white.

I've always operated under the "-est" system. This will be a chapter in my second book and in that chapter I put forth the concept that I always will remember a strive for the "-est"  that being the greatest, the best, or anything thing to the superlative. However, again, how is this measured? How do I know where I rank with anything I do? When it comes to games there is an easy way and that's with leaderboards.

The pinball game I mentioned last week has an easy way; one either has the world record or they don't. The sad thing for me is that I will try and try and fight and fight for a world record and when I get it, well, there is a fleeting moment of accomplishment but then there is a sense of emptiness because I realize that a world record like this, in the grand scheme of things, doesn't mean much and proved nothing.

I live with so many contradictions. Going for a world record means everything and getting it means nothing. Unless you have experienced this you may need to read that sentence several more times to maybe, just maybe, get a fraction of its meaning. On top of that I have always needed reinforcement on what I've done. That reinforcement comes in terms of being praised, but when certain people do give me praise I will instantly discount it because, if one of my parents give such praise it is, in my mind, either in simple kindness or through biased eyes. Whether or not that's the case, I can't really say, but that's the way my brain takes it which gets rather annoying to not be able to simply accept that something I've done is good.

Maybe another underlying factor is a sense of needing to be perfect. Perfection is something rarely seen, rarely experienced, and if one strives for it always, then they may just be setting themself up for a constant sense of always coming up short. I've mentioned this a few times in the past few months, but I am still waiting to have my first perfect presentation. I've been told I've given a few, but I just always know I can do a little bit better, to have a bit better pronunciation, to have slightly better timing and better responses to questions.

In the end, perhaps, it is simply that good is in the eye of the beholder and there is no quantifiable measurement of many aspects of life. How good is a friendship? How good are the words I've used? What's the score of this blog? The score of my previous presentation? These are all questions with no answers and living in an all or nothing, black or white world, a world without score or measurements, is a world of confusing feelings.

I set out writing this just wanting to explain it a little bit, but that previous paragraph is going to stay with me for a while. In fact, I'm going to go out on a limb and say that it was a good way to explain it. Yes, I'm going to allow myself the feeling of satisfaction on this because I may not have explained this all that well to you, but for the first time I have a firm grasp of why I've always been my biggest critic and why other'  words of praise has had no standing. Yes, all in all, I will rank this blog as good.











Monday, December 15, 2014

The Problem With Good

This has been a theme throughout my life on my issues with good. No, I'm not talking the difference between good and evil but instead just the concept of whether or not something was good. Good, in this instance, is whether or not a task was not to a satisfactory condition.

Early in my life there was no middle ground; I was either really good at something or really, really bad a t something. Math? Easy. Art? My goodness my stick figure people somehow always came out dismembered. Remembering the states and capitols? Had that down in kindergarten. Being able to remember a sequence of words or numbers and repeat it back? Ha! I was and still am awful at that.

In those school examples there was always a marker to measure and that was a grade. However, I never put much stock in grades and was, for the most part, a lazy student because what came easy was too easy and what was too difficult seemed impossible. There was always this great divide between good and impossible and herein lies the problem with good.

For myself, I live by this almost asinine logic of, "if something is truly good then it must be difficult to do." That being so, and having the things I'm good at come so easily it makes it where what is good is meaningless and what is difficult is this illusion of perfection and if I could do the impossible I would be happy and therefore with all that happiness is impossible.

I am my toughest critic. Because of this I will not read what I write and I won't listen to any interview I've ever given because it can never be good enough because all this that I do has become easy for me. Don't get me wrong; I'm not gloating or boasting and I realize that the vast majority or people out there would not be able to do what I've done the past five years and write 1,129 blog posts. That is a LOT of writing and there have been times that I've taken breaks due to writer's block, but the feeling of satisfaction is often absent because it's so natural for me to do and I do this without thought.

The problem with good also is that it is expected. Most of the time people will not realize what they have until it is gone. This too plays into being good because perfection becomes a virtue; it isn't something to strive for, it isn't something to wish for, it is something that becomes expected. My standards are lofty and because of this I often don't see what I've done or achieved in a day but instead I see the words I should've said or the goals not reached. It's easy for me to lose sight of who I am because I see all that I'm not.

This topic has come up in presentations. This isn't a typical question or topic that comes up but I'm amazed at the way others with Asperger's say they relate when I'm on this topic. This makes me realize I'm not alone in this struggle of pursuing perfection and having a curse of good. Again, I hope I don't sound like I'm trying to boast or brag about what I've done, but for myself there isn't a sense of, "hey everyone, I'm Aaron Likens, two time award winner, a blogger with readers from around the world, published author..." No, my daily thoughts aren't anywhere near that. I see what I have yet to accomplish. I see the holes in my skill set and wish dearly that I could do those things that I can't.

When things come easily as they have for me in the areas of life that I'm capable at they came too easily. When things are difficult they prove to be a task that I can quickly become frustrated on and give up way too early. Unless you've lived with this I don't know if you can appreciate the self-loathing that can come from this and it would have to be confusing because you'd think we should be content, happy, and feeling accomplished. This, at least for me, is about as far from the truth as possible.

I wanted to write this and share this with you because A. If you do have Asperger's and experience this you aren't alone and B. If you are a parent or teacher and have a child of student that has tendencies like this it isn't that we are trying to be difficult or are simply moody. Nope, it's not like that at all. In some things we can excel and exceed expectations and if we do it possibly came naturally and without. Using the logic of, "something must be difficult to be good" this would mean that those great things are irrelevant and the only thing that matters is what is difficult and impossible which leads to frustration/fail-set and acquiring anything remotely close to motivation can prove to be difficult.

















Thursday, December 11, 2014

The #1 Kansas conversation

Today's blog actually is a conversation I'm having on my Facebook page regarding the game Minecraft as I try to better understand its appeal. If you aren't following that page you can at https://www.facebook.com/pages/Aaron-Likens/97623166506

Tuesday, December 9, 2014

Back in Front

There are few times that I get nervous before a presentation but today is one of those days. It's been a while since I've given a presentation and any time there has been a time lapse between presentations I always get nervous due to several reasons.

The first is that I forget, well, I forget that I'm a public speaker. Even though I'm closing out my fifth year doing this it still seems foreign to me. I'm shy, I'm quiet, and I'll do anything to avoid a social encounter and yet I have the ability to stand in front of hundreds, and sometimes a thousand, of people and speak. Is this real? It often seems false and when I've had a presentation break I forget that I am capable.

Secondly is that I worry that I'll forget my presentation. I worry about this each time but each time it's like the overused but perfectly appropriate line of, "it's like riding a bicycle." It truly is because about three seconds into my presentation I go into my presenter trance mode and the conscious effort to present goes away and I'm on autopilot of sorts.

The third, and last thing that makes me nervous after a break, is excitement. I truly enjoy every second I am in front of a group and it makes the time just crawl to the scheduled start time of a presentation. That's how I feel right now as I wait, and wait, and wait. This leads me to start thinking about the first and second thing I mentioned in this blog and then I get excited, then I doubt myself once more and this cycle will keep going until I stand, with confidence, in front of the group I'll be presenting to and proudly say, "Hello, I'm Aaron Likens, Autism Ambassador for Easter Seals Midwest and author..." Oh! I can't wait!

Monday, December 8, 2014

The Hidden Middle Ground of Autism

I got my diagnosis of Asperger's 11 years ago this month. As my story goes,my doctor didn't really know what it was and he told me, "good luck" to which I was relegated to looking it up on the "all knowing" internet. The information I got back then was awful. The first site I read stated, "people with Asperger's will never have a job, will never have friends, and will never be happy." Obviously not a good introduction but I've been thinking about what would I feel if I got my diagnosis today? Have we advanced? Has information gotten better? After much thought I am fearful.

Via social media, stories of autism are quickly shared and an autism horror story of abuse, crime, or some other story, be it about bullies, is beyond prevalent. And the thing with these stories are that they don't go away. Should they be shared? I'm not going to say no as today on my Facebook newsfeed was a story about a person with severe autism who was restrained to a bed for 21 days in Australia. Should there be outrage? Absolutely, and yet at the same time these stories, one after another, come out and if someone isn't already affiliated with the autism spectrum the word autism is going to have a major stigma because, per social media, we've either committed a major crime, had a major crime committed against us, or we a target of severe abuse.

On the flip side there are many stories about the exceptional achievements by those on the autism spectrum. These stories, as well, can be helpful or harmful. Harmful? For those already affiliated with autism, our hearts soar when we see a person on the spectrum make a great play on a sports team he always wanted to be on, or being elected homecoming king or queen, or being light years ahead of their peers in school. Yes, this is good. But for those not yet introduced to autism, it's got to be oh so confusing because on one hand there are stories of abuse, neglect, and worse and on the other hand there are these stories of supreme compassion and stories showing the perseverance of the human spirit. Now, had I just seen the superlative stories when I got diagnosed I'd have felt somewhat, well, overshadowed, intimidated, and depressed because all of these stories have told me that I should have been this amazing person with all these amazing accomplishments.

Here's the thing; both of these types of stories, the horror and the great, are going to be shared and maybe societal change will come from seeing the neglect, but for those not yet diagnosed the autism spectrum has to be this puzzling enigma and making heads or tails of it is something that most people won't give five seconds for and what is lost in all of this is the middle ground; the everyday life of living life on the autism spectrum.

Sure, middle ground of anything has never been newsworthy. When was the last time you heard a news anchor say, "Our lead story today was that it was an average day in the city. We go live to our reporter who is in a park where not much has happened today on this average day. Steve, what are people saying in the park about the average day today?" Yeah, that isn't going to happen and that also is why I feel our struggle for not just autism awareness but rather understanding is becoming a much more difficult task. Talking about social anxiety in a crowd, or not understanding the timing of a conversation, or talking about sensory issues isn't going to have that shock value, or that heartwarming story that a person is going to remember throughout their day. However, living life on the autism spectrum is to live in that middle ground. If you are reading this then I'm going to assume that you are already aware of the autism spectrum and understand what I am saying. My concern is those outside this awareness. My concern is the images that those people receive because they are only going to see the extreme good or the extreme bad. The middle ground receives no attention which may make a person have no idea what autism is when they encounter it. Is it something to be deathly afraid of? Or is it something that, in the end, is going to have a heartwarming conclusion? Lost in it all of this is the "normal" person on the autism spectrum who is trying to make it in life and struggles with a simple task such as saying "hello" or a student in a classroom who just can't understand why no one in his class shares his love of cars from the late 1940's.

We must strive onward and yes, there will be more horror stories that will make the rounds, and there will be stories on the opposite end that will warm the heart, but it's in the everyday struggles that life occurs for most people and if the world just sees the extremes the world will forever remained as confused as ever on what, exactly, the autism spectrum is.

Friday, December 5, 2014

The Annual December Blues

It's becoming an annual event and I'm not sure why. Maybe it's the changing weather that triggers it. Maybe it's the symbolic closing of the year. Maybe it's because this month has so many memories. Whatever it is I can't wait until January!

Starting this past Tuesday morning I just felt, well, abysmal. Energy? Gone. Creative juices? Not flowing. Anxiety? Running wild. Sleep? Hard to ascertain. Waking up once asleep? Even harder.  This is the norm for this month and if you go back in my blog archive you'll see I have a post like this each year whether it is about the anxiety or the insomnia.

As the first day of this went on I wasn't even fully aware that it was December making me, for first time, potentially ruling out the fact that so many memories are contained within this month. Sure, I may have been aware of it in a subconscious level, but I wasn't consciously aware of, "oh, look at that, it's December."

So what is it then? Is it that it's just a natural thing to go through tater a busy year? That's one correlation in that while I've been blogging and presenting October and November are extremely busy which every person at some point in time is going hit the wall. Is this what this is? Is this simply my body saying, "hey, need a break here!" That might be but one of the things spurring this anxiety is the fact that I'm not traveling or presenting at the moment. Talk about a confusing feeling! I'm exhausted but I feel awful that I'm not doing things that are exhausting.

It truly is odd to have this duality of sorts. It's awful though having the issues that come with it. Sleep is, indeed, hard to come by but when I am asleep my dreams are the most vivid I can ever remember which in turn makes waking up almost impossible. This creates a self repeating cycle and furthers the inability to properly deal and process emotions which makes everything seem impossible and on and on it goes. As I said, I can't wait for January.

Wednesday, December 3, 2014

YouTube Series Upcoming

Several Saturdays ago I filmed the first four parts of my upcoming YouTube series and on the final day of the Supernats we filmed the final episode. 
It was rather odd for me to be filming rather than giving a presentation to a live audience. Actually, it was downright peculiar. I've done 584 presentations now and I've become accustomed to getting live feedback from an audience. In fact, I feed off the audiences responses and an audience that is into my presentation most likely is going to get a more enthusiastic presentation. However, I had no ability to garner any feedback as I stared into the soulless black lens of th camera. 

Episode five, which is what is being filmed in the picture above, was the easiest episode to film because I had sunglasses on. I wouldn't have thought it, but one of th issues I had filming was eye contact with the camera and having sunglasses on made the process of filming easier. 

The series, which is going to be, "the five most important statements, in my opinion, you need to know about autism" is going to debut sometime early next year and be released weekly on YouTube. I still have a prologue of sorts to film because not everyone knows my story so I'm going to have a video intro of who I am and why I do what I do. Once that is complete, and all is edited, it'll be time to debut the series which I am so excited for and I can't wait until you get the chance to watch. 

Monday, December 1, 2014

The Most Anticipated Game Got Released!

Last year both the Xbox One and Playstation 4 got released. Many gamers compared the specs of the two systems, the exclusive titles, the online interfaces, but for myself I was an early adopter of the Xbox One but the PS4 always had something I wanted. This, to me, was beyond a nuisance and I always felt as if the Xbox One wasn't even in the same hemisphere compared to the PS4. Then, finally, the most anticipated title, at least in my mind, got released for the Xbox. I'm not talking about Halo: Master Chief collection or any of the other triple A titles that have come out in the past month. No, I'm not talking about any of those as the titles I'm talking about is Pinball Arcade!

Pinball? Most anticipated? Each person has his or her own taste and on system launch days last year the PS4 got The Pinball Arcade leaving us Xbox'ers out in the cold. I've loved pinball ever since I was tall enough to play and while Zen Studio's Pinball FX2 is an amazing game it isn't the authentic experience that Pinball Arcade is. You see, this is more than just a game for me but rather a trip down memory lane with most of the titles on Pinball Arcade I played at some point some where.

One of my favorite annual stops when I'm in Vegas is The Pinball Hall of Fame (shown to the right. Why do I have such a goofy smile? I took this photo and sent it to my sister whom can't stand Wheel of Fortune... or at least she can't stand playing the game against me) but that place is some 1,600 miles away from me and now I can play many of the games there on the Xbox.

As I said though, the Pinball Arcade is more than a game for me and it is the videogame epitome of the "Associative Memory System" which is that my memories are tied to events, places, numbers, or even pinball tables. My personal favorite table of all time is the Star Trek: The Next Generation table. This past weekend I spent many, many hours going for the online world record on it and I had it for a while before another gamer put up what appears to be an unbeatable score. I'll keep going for it, but the first time I played the Star Trek pinball game was the day after my family moved from Indianapolis to Saint Louis and we went to Crestwood Plaza and the Exhilarama arcade. Remember arcades? Anyway, I, at the age of 10, was already keen on all things pinball and I noticed a long line and what appeared to be a huddle and I couldn't see the table at the time but the unmistakable music from Star Trek was playing. I got in line and it must have been about an hour before I finally got my chance and it was pure pinball heaven.

Going back to the assocaitve memory system, having Asperger's as I do it is an important part in the way I measure time and the tables on Pinball Arcade essentially span my life. Another favorite table of mine is Cirqus Voltaire. I first played this table at the Route 66 Family Fun Center in 1998 and I don't know if it were the angles of the game, the speed, or what, but I could make fifty cents (one play) last 90 minutes. Ask my dad about this table and he'll just shake his head because "one game" often meant at least an hour of waiting because my games went on and on and on. Also, it became a bowling tradition as I bowled on a Wednesday afternoon junior league so before bowling I'd often stop at the arcade to play this game.

The nostalgia could go on and on and on, but I am so elated that FarSight Studios has crafted such great representations of the pinball tables I grew up with. It's hard to find places that have working pinball tables but now with The Pinball Arcade the games I grew up with will live on forever. That, and also my memories will stay as fresh as the day it happened. I can still remember that line for Star Trek, the smell of the arcade, the dings, bells, and all the other noises long lost from the era of arcades.