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Thursday, August 28, 2014

Don't Tell Me...

One of the biggest things that would anger and confuse me, and they do to this day actually, is to be told how I should feel or any sentence that starts with that.

I blogged about it several years ago, but in 1st grade, in music class, the teacher played a song that had deep bass tones and it gave me a pain response and she said, "no it doesn't!" What was I to think about that? I was hurting and I was being told it didn't. I was confused.

To this day I still experience these types of situations and it becomes a highly belittling experience. Take for instance if I need something others don't, or let's use a sensory issue. A month or so back there was loud music playing and I walked quickly passed and a person asked me what was up so I responded that it hurt and they said, "No it doesn't!" and again I felt, I felt, I don't know if you can understand this but this makes me feel less of a person because I;m being told that how I feel is wrong.

The starting chapters of my book Finding Kansas and the relationships I destroyed bothered me for years and again other people would say, "Aaron, it's been years, it shouldn't bother you!" Again, how am I to respond to this. Should I say, "Oh, you know, now that you mention it you're right and I'm now happy." No, it doesn't work this way. When something bothers me it can be there a while and to have these emotions discarded led me to the point that I simply would not discuss anything emotional because I began to fear other people's response.

As the title of this post states, "Don't tell me..." which that sentence can end in many different ways be it, "Don't tell me it doesn't (or does) hurt" or, "Don't tell me I shouldn't be bothered" or even, "Don't tell me I shouldn't be afraid because I am."

It's typically hard for us on the autism spectrum to discuss our feelings, our hopes, and our dreams and when we do, if we are discounted, it can be confusing. My first grade teacher once said, "Aaron, weather is nothing to be afraid of" which meant what I was feeling was wrong because I was afraid therefore that meant I was a weak person. That was the logic my brain had.

Of All things there is nothing worse than to be told that what I have, and the challenges I face, shouldn't be there. This is probably the most ignorant thing a person can say and some people will say things without thought about it. Many situations can arise that have this whether it is asking to hear directions again because I have horrible short-term memory, or wanting the environment to be dimmer or quieter because it's just too much for me to handle. In any of these events please, please, PLEASE, don't tell me to simply "man up" or "get over it" or that it, "isn't too loud." While it might not be any of those for you for me it is much louder, brighter, and more distracting than you can know.

If the world only knew the strength it takes for me to walk out the door each day. It's a struggle. Some people ask if I'm cured and I'm not and there are times that things are too much. When this occurs, now more than in the past, people understand, but there are still those that have no concept of what autism, Asperger's or any of the others words associated with them mean. Even though I know that they are 100% ignorant to these facts I still feel less of a person when I'm told I should be "normal" or be someone that I am not. Deep inside I want to apologize at these times. Imagine that; wanting to apologize for one's existence but that's the shame that can be brought about when told that who I am, what I am, and what I feel is wrong.

Wednesday, August 27, 2014

Tuesday, August 26, 2014

A Walk in DC

Yesterday the USAC director, Kyle, and I had a day in the Washington DC area. The day started with lunch at Santini's with my aunt which I have to say made it feel as if it were November as that's when I am normally there. From there we went to DC as Kyle had never been there before and I highly enjoy being a tour guide of sorts so we, eventually, found a parking spot and we took off.

Everything was done on foot and we parked about half a mile from the Smithsonian Air and Space Museum which is my favorite so we went there first, but after seeing the new building at Dulles Airport the old building just wasn't as awe-inspiring as before. Sure, seeing Apollo 11, John Glenn's Mercury capsule, and a Gemini capsule can't be beat, and feeling part of a moon rock, the amount of aircraft just isn't what it is at Dulles. So later today that's where we are going.

From there we walked and crossed the national mall and I took this neat panorama photo.


We made the trek to Ford' theater which was about to close, but we made it in just in time and from there we headed towards the capitol building. I actually had never been close to this building so we walked and on the way we came across a Barnes and Noble. I went in because I am always interested to see if my book is in stock. Maybe it is a little vain, but there is such a feeling of accomplishment each time I see my book on a bookshelf and it took a minute to find the psychology section as it was as far back as one could get in the store, but there it was!

I felt so honored seeing that and that gave me more energy to make the walk to the capitol, and from there we walked back the same way towards The White House, which I also had not been to, or at least as close as one can get. Along the way we saw the Canadian Embassy which was an amazing building I do have to say.

From The White House we went back to the car and all in all in what was a full day, but the day was full of thought. The last time I walked on The National Mall was back in 2003 when my life was in severe turmoil and my aunt and I spent a day walking around and had dinner at the old post office. The events of that time should be in my 2nd book and I don't want to think/discuss them here at this point in time, but I relived a lot of emotions about people, places, and time. This motivated me even more to push towards the future. I have a couple big ideas which one of which I made a lot of progress several days ago and maybe today I'll finish the first draft of it.

Yesterday, being in that place, I was able to relive what was. This is something that I am blessed and cursed on having, but I could feel the emotions I had 11 years ago and this gives me the knowledge that I am doing the most important job I could be doing.

Monday, August 25, 2014

A Suitcase Lost

Over the weekend I worked the USAC .25 race in Hagerstown, MD. When we arrived to the hotel Thursday night I had an issue with my suitcase. It started out as an inconvenience with the zipper not wanting to open. However, the problem persisted and I tried and tried to open it but it just wouldn’t budge.

I eventually asked the USAC .25 director, whom I was rooming with to help, and he tried and still nothing. This wasn’t looking good and when we took a closer look the zipper track and broken and the zipper itself had come apart from the suitcase itself. The damage, unfortunately, was terminal.

There wasn’t much that could be done to open the suitcase without destroying it and this is where my emotions started to set it. This suitcase wasn’t just a suitcase it was my suitcase… okay, so it was my dad’s and I borrowed it several years ago and never gave it back but that just added to the legacy of it. In a way it was like traveling with my dad all those years ago when we did so. Also, I’d been all across the country, and to Canada, with that suitcase. The associative memory system with this suitcase was strong.

To get into the suitcase we took a knife and cut into it. As the director put the knife into the suitcase it was as if I were watching a friend die. I know that sounds extreme, but for myself having an attachment to objects this wasn’t just a loss of a thing to pack clothes in, this was an event of losing my travel companion whom I’ve traveled to races and presentations and essentially grown into the person I am today. Last year I traveled with that bag 200 days of the year so the memories were strong.

Slowly the knife made its way around the suitcase and I was finally able to get to my clothes, but in the process the usability of the suitcase had become lost. Its journey was now over. A day later I went suitcase shopping for the first time in my life and I did buy the first thing that looked suitable which was a mistake because I should have bought the same brand and model of the one that was lost, but this didn’t happen.

Sunday morning, when we left the hotel room and the bag behind, I took a final photograph of it. If you don’t have this attachment to objects like I do you probably are reading this and maybe shaking your head with no understanding of what this suitcase meant to me. I had to take that photograph and it will be one I cherish for a long time because over the past four years that bag was with me from the start of my journey to where and who I am today. Sure, I’ll create new memories with this contraption which is called a suitcase that I bought, but it’ll take a long time to move on from the suitcase that was lost. Most people can discard inanimate objects without a second thought, but things mean more to me and when things are lost it isn’t just a minor event, it can be an event which brings a tear, or many tears, to my eyes.

Thursday, August 21, 2014

Hope Seen

So sometime, somewhere in the past I was at a store and as I was walking out I heard an employee talking to a customer. I don't know how it came up as I missed that part but the employee was talking to the customer about autism. Actually, it was rather frank as the employee said, "Oh, yeah, I have a form of autism. I actually have Asperger's." This was interesting for me because I had never heard an interaction like this from the outside so I swooped into the aisle next to this one to hear the exchange.

The customer took interest in this and mentioned that they had never heard of autism and the employee was able to explain that Asperger's was something in the middle and those with severe autism may not be verbal.

This conversation continued for a short while longer and I had the largest of smiles on my face as a person who knew nothing about autism learned something from a person who was willing to state it, explain it, and educate a complete stranger on the matter.

Autism awareness is something that we need to perfect as 99.9% of society being aware and understanding is not good enough. Will we ever get to 100%? Probably not, but is something to strive for and to increase the percentage we need as many people spreading the awareness as possible. It isn't just up to an agency, a single person, or a corporation to do this to reach 100%. It will take many of everything (agencies, people, corporations...) to reach this number and to come across a person who was willing to go out on a limb and take the risk to open up, and then to take the time explain, and then in turn to have the customer take an interest is what I define as hope for the future.

I firmly believe that understanding is the foundation for hope and it's going to take each and every person possible to reach the destination of full acceptance and awareness. I, sadly, left the store without comment to the employee but knowing myself, had I been in that role, having another random person coming up to me to thank me for that would have been awkward so I said nothing. However, seeing this play out and knowing that there are many voices out there willing to speak up instills a further fire to my passion. We aren't alone in this mission and the only path from here on out is forward!

Tuesday, August 19, 2014

Social Media Links

I'm still processing the topic of yesterday's post, but I did want to publish something today so this will be short, but if you aren't following me on social media here are my links.

For Facebook

For Twitter

Monday, August 18, 2014

To the Kid in the Kia

I've written many times on my love of travel and the fact that, when cars are driving down the interstate, everyone is sort of alone and there isn't normally social interaction between the occupants of the cars. In other words, the car is a safe place for the fourth wall to stay intact. However, yesterday I had the briefest of breeches of the fourth wall that left me almost gasping for breath.

I was headed home from the USAC.25 race in Kalamazoo, Michigan and the drive started off slow with multiple accidents slowing my progress. I lost over two hours in these delays so I was highly frustrated. Somewhere near Chicago later on I was driving and listening to a song that, well, okay I may have been a little excited and it was obvious I was singing along, and as a car was passing me to my left I glanced over and just happened to make eye contact with a kid, perhaps a teen, in the rear passenger seat.

If you've seen my presentation you know eye contact is something that is difficult for me and even more so in random situations where a social interaction arises. Again, this is why I like driving in a car because eye contact is typically difficult. However, here, eye contact was made and what the kid did next set of a mental storm of activity.

As eye contact was made the kid immediately raised his hand and waved in a friendly manner. I had never come across this and instantly I felt a wondering connection to this kid. I thought about who he was, what type of parents he has, and what type of person he will become. This was identical to the way I described a trip to Taco Bell during my sunglasses experiment in that this wasn't just another car on the road as I see it as it can be overwhelming to think of all the people on the road and that each person has his or her own story, but in that Kia beside me was a person who had just reached out with a friendly gesture of his hand and to me he became real.

This, right here, is one of the reasons random eye contact is hard. The amount of thought flooding my brain was hard to process. Emotions I usually stave off were flooding in and a feeling of empathy in that we're both two people on this blue Earth and he'll never know my story and I'll never know his was hard.

What was just a few tenths of a second had more thoughts than I normally have in an hour. I didn't know what to do as my emotions were at a point of overflowing. I also realized the seemingly absurd nature of these emotions, but if people aren't real around me then there is no thought of them. This is why I look down when walking as if I make that eye contact, and there's an interaction like this, I will have not a lack of emotions or empathy as some experts state people on the autism spectrum have but rather too much.

The time in my brain made it feel as if a minute had gone passed and I was now feeling rude because I had to respond, right? So what I did was I gave a slight grin and I nodded. It was silent, obviously, but in my nod I said so much, at least in my brain, "To the kid in the Kia beside me who broke the fourth wall I wish you the best. I do not know you, but you took the time to be friendly when I was rather frustrated. You'll never read what I'm going to write about this but your simple act of kindness was exactly what I needed. It's odd how just one brief moment of eye contact and one simple wave of the hand can create so many thoughts, but that's how life works and you once again showed me this. Again, I wish you the best for the future and I hope your life turns out to be great."

I knew this was going to be a blog post as I gave my nod hence the wording in the paragraph, and as the Kia drove on down the road I felt the same way I did with this Chevy Cobalt in 2010. This time though, unlike that one, eye contact had been made and this time it was like losing a friend I had for one tenth of a second. That may not sound like a big deal, but when I lose anything it is a big deal.

It felt odd to have such a response to this as I drove onward. There can be people all around me and as a defense I have to minimize my interactions with them (this excludes when I am in "Alias" mode) but when the line gets crossed, and I understand that the person is real, the elements put forth in this blog comes out.

As the sun set in the west as I was now on I-55 I wondered if normal people experience this fleeting moment of kinship with a person in that we are all human, we all have a story to write, and we all have hopes and dreams? I'm not sure if it is or not but when those emotions get triggered for me it is nothing short of an overwhelming experience.

Friday, August 15, 2014

The Season Begins

I drove from Saint Louis to Kalamazoo yesterday and it was a drive full of reflection. With being on the go so much and having so many entertainment options on an airplane I really haven't had more than two or three hours to simply be and think and on my drive yesterday I had more than enough time.

On my drive I thought of the past 11 months and just how amazing it has been with 140 presentations to 21,538 people. I don't know if I'll ever experience numbers like that again, but I thought back to my October national tour and all the schools I presented at and I then thought of all the schools across Missouri I spoke to including a tour of every school in McDonald county, and I began to think of all the students I met, the questions asked, and the lives impacted.

You see, I don't often realize that anything I do has any impact at all; I simply do it because it needs to be done and that's my job/passion. This isn't me trying to be overly humble as this is a fact and once a presentation is over it was as if that presentation didn't exist. That is, until my drive yesterday that I finally had time to process it all and I was moved to tears as I crossed the Illinois/Indiana border as I thought of the compassion I've seen in students I've presented to which brought me to the realization that the school season has begun.

The start of the school year used to be the worst time of year. For myself it was filled with angst, terror, anxiety, sadness, fear, and I'm sure I left a few emotions out. Needless to say it was bad as my serene schedule of the summer and not having to worry about socializing, the potential for fire drills, and the often taught but never learned concept of prepositional phrases was over. It's odd how time changes things as now as summer comes to a close my season begins and the start of the school year marks another chance to go into one of the toughest presentation arenas and give it my all.

So often I've heard from principals that, "Yeah, these students don't do assemblies very often so if they are disrespectful take no disrespect from it" but I have to be honest and say that I have yet to have a bad experience. As I've stated so often the only word I can use for a school presentation is, "magical."

It won't be long before I have my first presentation in a school and I think back to my very first school presentation in October of 2011 and how I feared it and considered it to be nothing short of, "Aaron vs. 5th graders" but now there's no more important forum for my voice and it won't be long until I get the chance, and the honor, to stand up in front of a multitude of students and proudly proclaim, "I'm Aaron Likens, Autism Ambassador for Easter Seals Midwest and author of the book Finding Kansas which I was able to write from a first hand account of having Asperger's..."

Wednesday, August 13, 2014

The Line That Changed it All

I got asked a thought provoking question on Monday when a person asked, "That website you read that gave you no hope; how did you come to realize that autism is a vast spectrum and not everyone is you?"

That question, well, the timing couldn't have been more perfect as I was able to talk about my Rumor blog post, which if you haven't read it I do suggest reading it after this. Anyway, after I talked about the rumor post, I went back to me beginning with Asperger's and the website I found after an internet search as my doctor proved to be clueless and I found a site that said, "People with Asperger's will never have a job, will never have friends, and will never be happy."

Why do I so often refer to that website? If you're a longtime reader you've probably seen that mentioned at least a hundred, if not two hundred times. So why do I keep mentioning it? I do so because there has been no other moment in my life in which my life changed. It wasn't the diagnosis that was bad, in fact I feel knowing is much more important than not knowing, but reading those dire words gave me no hope and I stayed that way for a long time.

Then, in 2009, the organization that would eventually become known as Easter Seals Midwest asked me to go through their parent training program. I agreed to do so because I hadn't done anything relevant for a long time, which probably wasn't the best of reasons, but anyway early on in the multi-week course the trainer said this, "And people, there's nothing more important than you can know over knowing that, 'if you've met one person with autism you've only met one person with autism.'"

I have since used that line many, many times on here, on Facebook, and in my presentation and while some people have credited me with coming up with that line I did not. I actually don't know who first said it, but regardless of who did first say it I know that line changed my life. You see, after reading that website and also seeing autism depicted on the news I believed that my life was going to be fruitless, pointless, and full of aggravation. And why wouldn't I believe it since I didn't have the understanding that it is a spectrum and two people can have the exact diagnosis and yet be polar opposites in terms of likes, dislikes, and skill sets.

The dangers of not knowing this all important statement is that one can be defined by their diagnosis and the news they hear about it. This goes back to my rumor post in that a box will be formed. The counter to any of those rumors is this all important line. It took me over five years to learn this, five very long years, and I do wish I would've known this sooner.

To add just a little bit more to this; if there isn't understanding of "if you've met one...", then the autism spectrum can be a scary and sometimes confusing place as if two people have the same diagnosis and one person is exceptionally skilled at math (and this is what the media often depicts. Math or science, actually) and the next person isn't then what is the person not good at math going to think about themself? If all people with Aspergers' are math geniuses, and they are not, then just how big of failure are they? That would be the thought process and if that person were good at art then that would be irrelevant because they haven't heard the fact that a person on the autism could be good at art because they're, according to "they" are supposed to be good at math.

Once again, I don't know who coined the term but I know it wasn't me so don't give me the credit. I just share the wisdom of it because I feel, and I was told this but believe it firmly, that there is nothing more important than knowing this line. We use words everyday, we'll speak in sentences, in paragraphs, but there aren't many times when words change a person's outlook on life. I went from hopeless to having a cause all because of this line. I went from being defined to wanting to help make the definition, but most of all I went from being simply alive to living life all because I finally realized I wasn't stuck in a box, I wasn't destined to failure, I was myself! an unique individual and I had the power to live my own life. Did I still have Asperger's? Yes. And did this mean the challenges vanished? No, it did not. However, I realized failure wasn't my destiny.