Easterseals Arkansas Ambassador Aaron Likens is a notable presenter and author of Finding Kansas. He took two years off from writing following some personal inner struggles but is back after landing his dream job in 2020 as one of the starter/flagmen for the NTT INDYCAR Series.
He explains in a blog post, “I have walked through the shadows and have to make peace with it. It was years and years but I’m back! My brain finally worked out that the sum of my being is not dictated by a single person. I now understand the evidence that people always pointed out when I attempted to say I wasn’t okay.
“I have a newfound understanding of the challenges we on the autism spectrum face and endure daily. So often professionals would say, ‘Aaron, what makes your content and presentation so unique is that you aren’t a clinician talking about data or third person observations but instead you’re a participant.’”
Aaron is blogging nearly daily now and is working hard to raise the level of autism awareness. We are happy to partner with him on this journey.
Below are excerpts from recent blog posts. You can read more at http://lifeontheothersideofthewall.blogspot.com/.
The Story of the Can
In Finding Kansas, I told the story of the soda can. I’ll retell it now as I’ve got a story that’s only relevant if you know the story.
The year was 1995 and I had a friend over. I didn’t have many friends and this kid stayed with his dad, who lived behind me, on the weekends. We both enjoyed the same type of videogames, and we must’ve done at least 100 World Series on the Ken Griffey Jr. baseball game. Over the course of one of the weekend visits, he placed a finished Minute Maid orange soda drink on my dresser, and it stayed there for a bit.
It wasn’t until I started presenting in 2010 that I realized this was a thing as the PowerPoint I used for my police presentations stated that, “those on the autism spectrum may have an inappropriate attachment to objects”. I knew I had this, although I will argue that it isn’t inappropriate at all but was unaware so many share in this trait.
So that soda can stayed there for a while. A few days turned into a few weeks turned into a few years. Well, five years later when I went to the Derek Daly Academy racing school in Las Vegas my mom thought she would do me a favor and she cleaned my room. The room? Yes, it was a mess and perhaps borderline disaster area if the EPA were involved, but what I couldn’t verbalize back then was what everything represented.
I have a tremendous memory, except when it comes to people. It’s like an undercover news show where faces are blurred out. Because of this, I have to remember people through other means and the number one way I recall people is through items. This soda can was my connection to my friend. I could almost see him in my memories through this can.
When I returned home from that most glorious week of driving race cars I was shattered when I walked into my nice, sparkling clean room. That can, in all of its 90’s artwork glory, was gone. I tried to keep my emotions afloat, but I sank fast. I cried more over the loss of that soda can than I did over the loss of my two cats and dog, but they weren’t a person, and with the loss of that can it was as if my memories of having a friend vanished into the air like a fine mist dissipates.
It wasn’t until 2010 and seeing the line about objects in the PowerPoint that I realized this struggle wasn’t just my own. I did feel a bit ridiculous having such a reaction to an inanimate object, but as I spoke to more and more people, I learned this is a major thing people need to understand whether you’re teacher, parent, or police officer; when entering the environment where a person on the autism spectrum lives or has items you must be aware of this. What may be an irrelevant trinket to you may mean the world to them.
Why I Wrote Finding Kansas
Over the weekend I celebrated 10 years since I received my first copy of my book. I now live by the motto, “Understanding is the foundation for hope.” It wasn’t always that way though…
Being diagnosed with Asperger Syndrome at the age of 20 was confusing. I mean, I had this diagnosis but didn’t know what it meant and sadly, neither did my doctor. I was left to find out what it meant by myself so I did an internet search and the first thing I read, the very first thing I read said, “People with Asperger Syndrome will NEVER have a job, NEVER have friends and NEVER be happy.”
After reading those lines it was as if my life ended.
I stayed this way for almost 15 months. I was bitter, hopeless, and angry at everything. Sometimes my dad would say, “I understand.” but how could he? Then, 15 months after being diagnosed, I had had enough. I don’t know what fuse blew in my mind, but I had to tell my dad who I was and why I was. Of course, I couldn’t speak it, but I went to my computer and I started to write it.
There’s a line in my book that says, “All I want is for someone to understand and maybe, just maybe, I will be free.” That was the motivation for me to write and I never intended on it being a book that got published. All I wanted was for one person to understand who I was. I also didn’t intend on creating a new vocabulary to describe the ways of the autism spectrum as I just wanted to describe to my dad in the best way possible the reasons why I do what I do.
My book is a journey through my thoughts and is at times sad, at times funny, at times hopeful, and most times emotional. As I was writing, I heard a speaker say that “People on the autism spectrum don’t have emotions,” and that too was a big motivator for me to continue to write because I knew that I had never heard a bigger lie in my life.
As I said, when I was writing Finding Kansas I never thought it would be something that would bring hope and understanding. From where I am now, I believe that we can have the highest autism awareness level possible and that still won’t be enough because without understanding how can society know what it is? Without understanding how can parents make the right choices? This was the sole reason why I wrote. Nobody understood me and I couldn’t speak what I thought or what I needed so I wrote to be understood and words can’t express what it means to be when I hear from parents that, “through your book I now understand my son.”
Speeding and Tornadoes
When I was five, I was a stickler on rules. If my dad floated a stop sign, I would let him know. If he changed lanes without using a turn signal, I would let him know (I still do!). As minor as those where I was very concrete on speed limits. I was almost obsessed with speed limits, why they were in use, and why the limit on I-465 in Indianapolis was 55 and the speed in our neighborhood was 15.
As I learned about the safety aspect, I began to believe 55 meant 55 no matter what. Then I had a thought that would plague me for months, “What would happen if a tornado was chasing us?”
With that question, I combined my greatest fear with my greatest belief in rules.
What would happen if the watch turned into the warning and a tornado developed behind us? Our safety is important, but the speed limit is 55. What if the tornado was a fast mover? Let’s say it was doing 70, 55 would not be enough to outrun it.
Provisions to rules are difficult to teach. Being a five-year-old deathly afraid of breaking any rules I thought that a person had to always follow the speed limit. If the tornado got you then so be it, but at least the rules weren’t being broken.
Slowly I came to the conclusion that it was okay to speed if one were to outrun a tornado, but it was not okay to speed if there was just hail or a severe thunderstorm. Through my provisions, I became confident that I had solved this conundrum. Doing this allowed me to understand that in all of life there are provisions to rules, and this was a milestone as, if I had not worked this out, I might have always been 100% concrete in that the rule is the rule and that is final.
In my police presentations I use this example: There was a teenager with autism lost in a large park. The police located the person and asked him what his name was. The person froze and did not comply with or answer any commands or questions. The officers knew this was the right person and had to bring the parents to the person because they were getting no help or compliance on anything they asked of him. When the parents go there, they asked, “Why didn’t you help the officers? They were trying to help you. The teenager responded, quite flatly, “Why are you mad? You told me that I should ‘not talk to strangers’ and these people were strangers.”
Concrete thinking is common for those on the spectrum and each person has a different degree of this. Some people can be flexible, others cannot (I am not flexible when playing games. We either play by the rules or we don’t play at all. House rules or you need to go to someone else’s house!).
I came up with nothing short of 15,000 possible reasons to break the rules, but with each situation, I worked through I developed a better sense of, well, common sense. I had to work through these to get to this point and had my “what if” situations had fallen on deaf ears I may be super concrete in all rules. I’m glad I’m not because my goal now is to talk to as many groups of people as possible about the autism spectrum and these groups are typically strangers to me and I was also told that I shouldn’t “talk to strangers”.
The Anxiety of Next
What’s next? This is a question my brain is constantly thinking and analyzing. However, I want you to expand your thinking on this and not think about what’s next as in what are you doing after you read this blog. I mean, you should think about going to Amazon and buying the book called Finding Kansas, however that’s not what I mean. Instead, think about next and every possible interaction that could come in the next five minutes. Think of every phone call you may receive and think about all of your potential responses. Then, keep going with an infinite list of possibilities and maybe you’ll get in the ballpark of what my brain does to me in almost every circumstance. To put it lightly it is indeed exhausting. A couple of weeks ago I talked about autism burnout and this, for me, is one of the things that’ll get me there quickly.
I haven’t found an off switch for this and when I am out with people all day long, I become emotionally fatigued in a way that’s almost shameful to admit.
On the flip side of that I also can’t explain my strength. Strength? What am I talking about considering I just mentioned I get rather fatigued simply be existing? While it is true that I get a bit overwhelmed at the end of the day the thing is I did, in fact, make it through to the end of the day. I can get hung up on the “weakness” at times and totally lose the fact that it takes an inner strength that is hard to describe to get the nerve to leave the front door in the morning and take on all the anxieties I know I have. I know my brain is going to overprocess and try to calculate the oblivion of next, and yet I will.
For anyone you may know on the autism spectrum I implore you to keep this in mind. While it’s easy to focus on the weakness, and we live in a society that so often just focuses on the bad, try and think about how much strength it takes to simply get through the day living life on the autism spectrum whether one can’t tune out any bit of sensory input, or to those that overprocess everything. Whatever it may be the dedication, passion, and inner strength it takes to simply attempt to leave the house, or pursue a dream, takes more strength than my vocabulary will ever allow me to attempt to describe.
I’ve worked with many of you for many years, and others have seen me at the track for many years. It’s no secret I have Asperger’s and on track I can assure you it is a great advantage for me. I can’t recall the amount of time I’ve heard “Aaron, how did you see that from half a track away?” I love it! The speed, the challenge, the reflexes required but at the same time there’s one aspect that weighs heavy on my heart and it’s been an albatross for as long as I can remember.
My wall is high. I do my job and put every ounce of my soul into it but one thing I avoid is either before or after the day and that’s the social aspect. Sure, everyone puts up walls, everyone is a little guarded, but when I have the energy to go out with the crew at the end of the day it seems to be a cause for celebration, and I’m always confused at this; is it excitement that I’m going along or more that I’m not hiding away?
It’s an isolating experience. There’s a part of me that does want to know everyone; to be a true part of the crew instead of a mysterious lonesome figure that is either 100% on or invisible. I may come across as cold, uncaring, or maybe downright rude and I have no intention of that. What’s going on in my brain I can only describe as a tempest mixed with a hurricane mixed with a GPS system that doesn’t know North from space zebras that are wearing funny hats.
Today I’m feeling down as I look back on the people I could’ve known, people that I do know but simply see, and while I should challenge myself to be more my limitations are great. Maybe in previous jobs this led to resentment. I’m not sure, but if I work with you now do know that even though I may seem emotionless or aloof I’m very grateful you are there.
I may prefer to be alone at the end of the day but I’m beginning to realize I’m not fully alone because there’s a peace that comes with others knowing this about me and not expecting me to be something I’m not. Perhaps all the work we’ve done in awareness and understanding of Asperger’s is evident right here in my life because I haven’t heard a cross word and others understand my need to recharge. The desire is still there to be a part of the team socially, but while writing this I got sad thinking about the chasm between but I’m smiling greatly in the realization I get to work with such awesome people that understand me. I hope the future will have this be commonplace for those on the spectrum to where it isn’t even thought of for a second that it should be any other way.
The Contradictory Nature of Asperger’s
Racing season is here! I head to my second race of the year tomorrow. However, as excited as I am, today’s blog is going to use the most traditional of all things in motorsport, the checkered flag, as a concept to describe Asperger’s. The thing about the checkered flag is that it’s so contradictory. In the top corner is one color and if you go just far enough, you’ll reach another, but then keep going and you’ll be back to where you started and so on and so forth. What does this mean? My experience in having Asperger’s is one of stark contrasts and it gets tiring. Here’s what I mean…
I want to be part of the social world but the social world tires me.
I want to be part of a team, but I often can’t see the concept of teamwork.
I have extremely good senses, especially when it comes to hearing, but I often wish I could turn it off.
I want to be alone but being alone is extremely isolating.
I need to be perfect in the things that I do but there is no satisfaction at achieving perfection.
I can give some incredibly witty remarks but often miss out on when someone is being witty.
I want to make sense of the world but often the more I know about things the scarier the world is.
Being in my Kansas is awesome but I often wonder what life is like out there.
I yearn to be normal but normal seems so boring.
I can do some things great and many things not so great.
Hard things come easy and what is easy to most comes at a high degree of difficulty to myself.
I want to care about others but allowing myself to feel is overwhelming.
I want to tell others what they mean to me but expressions of any kind are paralyzing.
Do you get the idea by now? It’s a constant struggle to be wanting both sides of the coin; to want something but to know if I had it the results would be just as difficult as living without it. This is why I stand by the title of this post in that living with Asperger’s, at least for me, is living a life full of contradictions.