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The Pain of Not Knowing

"It hurts" I said, with my hand up. The teacher looked at me, huffed, and then said with the most blunt and stern words of, "No it doesn't."

It was 1989 and I was six. It was first grade music class, and I was still 14 years away from getting my autism spectrum diagnosis. The teacher was explaining bass and whatever bit of music we were listening to was turned up to maximum bass. Kidneys were shaking, and if we had fillings at that age, they would've been shaking out of our mouths. However, I was 14 years away from any understanding as to the events of this day, and the long-lasting impact it had on my life.

This month, December 2023, is the 20th anniversary of my diagnosis. I've been struggling with writer's block because I have such deep emotions about this. After this month, I'll have lived more of my life knowing I was on the spectrum than not knowing. With that said, how could I commemorate this milestone? This story of first grade music class kept flashing in my mind, and it needed to be told once again.

The impact of "No it doesn't" transcended that day. Of course, how many people knew what sensory issues were back then? Asperger's was still five years from getting put into the DSM, so how could I blame the teacher? I don't, but this doesn't mean the impact was negated. What impact? The impact of being unable to advocate for myself.

While the other kids were loving the feeling of the music, the beat were like knives in my arms and legs. My heartrate picked way up, and I didn't know what adrenaline felt like and I couldn't identify it, but my body was in full fight or flight mode. I spoke up, I said how I felt, and I was told I was wrong. Think about that for a long second or two. With my belief that those on the spectrum operate with the system of, "whatever happens first always has to happen", that makes it an extreme danger that, the next time I felt any distress at all, why would I speak up? Why would I risk stern words from a teacher or family member? 

This is why the need for understanding is so great. It was a different world back then. Autism was rare, and there was minimal knowledge that approximately 90% of those on the spectrum will have a sensory issue in one form or another. I can tell you, I became fearful after that day of any big speaker, and any potential event that would create a lot of noise that shook the room I was in. Did I actually feel what I felt? If so, how could I speak up about it? 

The fear of the noise often became worse than the noise itself as I lived life in anxiety all from the words, "No it doesn't." Had I not learned about being on the spectrum in 2003, I can't imagine where I'd be now just in terms of the sensory aspect of life. It was a great relief would I finally understood what happened on that day in first grade. I do wish the teacher had said something else, or asked what I meant by the pain I mentioned as I might've not grown afraid of my own feelings and if others would negate how I felt. 

I'm often asked by people whether or not it's worth even getting the diagnosis anymore. This story of what happened to me in first grade, and the relief I experienced when my reaction to bass was validated was such a weight off my existence. My feelings weren't imaginary, my traits weren't because I was defective, and after my diagnosis it took a long while to understand this but, I'm not normal, but this doesn't mean less. As I've yearned to be normal, I finally realized that normal sounds boring so yes, there may be events in my life like bass that give me grief, but there's also a wonderful world of traits that I wouldn't have without being on the spectrum, and it took man years to understand and accept it, but 20 years on after my diagnosis I am so thankful that I am, and thankful for the answers of knowing that yes, it did hurt, but it's okay, and I hope fewer and fewer people go through what I did back in 1989.

20 Years an Aspie

"Aaron, I don't know what the future holds, but I know two things. We are going to get answers and there's going to be a lot of work to be done." 

Those were the words that introduced me to prospect that I might be on the autism spectrum. I was somewhere in West Virginia riding with my dad as we were driving back to Saint Louis after Thanksgiving. It was 2003 and my life was about to change.

I can't believe it's been 20 years. With this year's anniversary and with me being 40, I'll be at a point that I've known I was on the autism spectrum longer than I hadn't. This feels a bit surreal because I remember that drive back home in 2003 so vividly.

When my dad brought up the subject, I didn't really know what to think. He mentioned he read an article in a newspaper that sounded a lot like who I was and my skillset. I had never heard of Asperger's and he mentioned that he was going to have me see my doctor when I got back. While I was intrigued about this, the "a lot of work to be done" had me a bit scared. What did this mean? What would I have to do? While I would go to the doctor, I wasn't too invested in all this yet. Of course, the doctor meeting went bad.

I find it odd that I'm having a hard time writing about this. I've been jammed internally with the need to write this post, but the words aren't flowing yet. Maybe as December comes I can give this milestone 20 year mark the post it deserves.

Why don’t you talk?

“Why doesn’t he talk to me?”

That was the question an indirect coworker asked of a direct coworker. This was many moons ago, but the person asking the question didn’t understand. Most people don’t. 

Having Asperger’s, socializing just doesn’t come naturally. I’ve grown immensely in the past decade, but I’m still highly reserved and it takes a long time for myself to be able to socialize. That’s why most of my socializing is on the job. 

It can be confusing for those that can see a person like myself socialize with a seemingly level of ease that others could envy, and yet, if there’s just one change in the environment, there can be a drastic reduction in my ability to communicate. Things don’t get built overnight and so too my ability to socialize takes a while. 

I’m working the SKUSA Supernats this week and I’ve worked with some of my coworkers for a decade, some even longer! It’s awesome to be accepted for who I am and my lack of socializing outside of the track is understood. 

Employment can be hard for this very issue in that it can be so difficult for all parties to understand the dynamics in play. On the track I can be social, and the teamwork that takes place here at SKUSA, and with INDYCAR during that season, is something I wish came naturally for me outside of the workplace. 

As for me, now, I’m going to cherish today and the next two days as I stand at the finish line of the world’s largest race, and I’m free from the questions of, “why doesn’t he talk”? However… there seems to be a push to get me to dance. I understand this is all in fun, and it’s amazing to be in a workplace that I can truly thrive.

The Unexpected Call

“Aaron, you’ve got to stay for the podiums.”

Ugh! It had already been a long weekend of racing in Saint Louis and as soon as my responsibilities as the flagger and the race director were over, I’d head home. The social aspect of just hanging around to chit-chat was not my thing. However, the promoter told me I had to stay.

It was the first race of 2008, and I was working a regional series and the season started at my home track. The series became SKUSA affiliated and the owner, Tom Kutscher, was in attendance. I didn’t think much of this as no matter the day, if I were at a race track I’d be giving it everything I had.

The podiums began and I thought my presence was needed to assist with trophies, but as I attempted to help I was pushed aside. This… this was odd. Why was I still there? I endured the awkwardness of hanging around, and now I was just there, standing awkwardly, and for anyone that didn’t know I had Asperger’s, the signs were obviously apparent as I had no idea how to stand in the space I was in. 

I was getting flustered. On the track, there is no second thought of how I stand, how I move, or what is required of me. I love it. I crave it. At work, I’m at play, but this? What was this?

I tried not to look too uncomfortable, or irked, but I applauded on cue when drivers were announced and they got their trophies. Then, it happened.

Tom grabbed the microphone from the promoter and said, “folks, I’ve seen some crazy…” there were some colorful words, he then continued, “yes, I’ve seen a lot at race tracks but I’ve never seen anything like I saw today.” Oh goodness… what did I do wrong? That’s all I could think of. Whatever was about to be said couldn’t be good, “What I saw was amazing!” Amazing? This was sounding better, “Amazing, passionate, it was a show… I have found my new flagman for the Supernats… Aaron, do you want the job?”

The world stopped spinning at those words. I knew the importance of that race, it’s the largest kart race in the world. It’s an event that draws racers from all over the world, and I had to blink several times to think if I heard what I actually heard. I was speechless and now all eyes were on me. Tom then asked, “so , Aaron, do you want it!” 

Want it? I dreamt about working a National event and couldn’t believe it. I nodded, I tried to say yes, I was fending off tears as the crowd erupted in cheers. It was a scene out of movie, and as I drove home that evening, I kept the news to myself until I walked into the house and told my dad the exciting news, the news that would change my professional life.

Two things inspired me telling you this story. The first is that, right now, I’m on a plane heading to my 15th SKUSA Supernats. Secondly, the question I was asked by an individual as I presented at Easterseals Arkansas has haunted me for almost two weeks now. “Aaron, how do you keep your dream alive?” 

That question and this story, combined, gives me so much hope. I probably understates just how much of a fish out of water I was standing around awaiting the podium ceremony. My social skills were minimal back then. My timing in conversations were about as awkward as someone trying to tango during a slow waltz. However, my passion an ability at the job itself was noticed.

A dream can bring so much hope and so much anguish. My dream to be a race car driver was dashed right at the time of my diagnosis. It was the only thing I wanted to do in life, however, all dreams may not be fulfilled, but sometimes the dream can turn into a wonderful dream you didn’t know you had. From picking up SKUSA, I continued living my dream at the racetracks and there’s no doubt in my mind that my path to the NTT INDYCAR Series and the Indianapolis 500 absolutely needed that regional kart race in Saint Louis in 2008.

In this world, I firmly believe that dedication and passion for a job, any job, is noticed. It can be difficult to keep the work ethic of giving it one’s all because, what’s the point? Who is going to notice? If other people barely try, why should I? Those questions are easy to fall into, but one may never know who is observing, who is watching, and chances one didn’t even think were possible can come out of nowhere. Well, actually they came from somewhere. The passion and drive we on the spectrum can have when our job lines up with our passion. It may not be a job, it’s play, and given the opportunity we may shine brighter than anyone could’ve imagined. I never could’ve imagined the events that came after 2008. I’m grateful, beyond grateful, my passion was noticed. 

Fear and Interviewing

"Aaron, do you have any sales experience?" 

The question hung in the air with no response from me. If this were a game show, I'd have been buzzed long before I spoke, but I had to assess this question.

Job interviews can be daunting for those on the autism spectrum. We can strive to be perfect which, at times, may make us overprocess the question at hand.

This was an interview for what I hoped would be my third job. I didn't interview at my first two, so this was a new experience, but in the back room of the mall videogame store, the setting reminder me more of a police interrogation instead of a place of commerce. It was cramped, and the manager was hovering over me with my resume in hand. It was as if he had all the answers, and in this inquisition, it was up to me to get the right answers but... what was right?

There had been about 20 seconds since the question had been asked. Sales experience? I thought back to my jobs and my first job that wasn't at a racetrack was at a bowling alley. Now, the question was, "did renting out bowling shoes count as sales?" 

When I present, I make sure to let my audiences know that, while our answers may be delayed, it doesn't mean we are "slow". Others may easily be able to rationalize an answer, but I was trying to determine what the meaning of sales were. 

I had the thought of, "why can't we talk about videogames because those I know.? Panic began to set in. I knew an answer was needed but I couldn't think of the right answer. To give an answer of anything I gave the response of, "I don't know." I then thought, "genius answer, Aaron, pure genius."

The next question surely would be about videogames but instead, out of leftfield, came, "Okay, I see you've worked at a racetrack so do you have any management experience?" 

He was right, I had been flagging for the Saint Louis Karting Association for six years, and when I was on track I was in charge of the operation of the race, but was this managing? I had corner workers I'd talk to during the race, but was this managing? I didn't hire them, but I could tell them to wave a yellow flag. More alarms in my brain started going off as I wasn't prepared for these questions, I wasn't yet diagnosed with ASD so I didn't know that overprocessing was a thing, and I most certainly couldn't come to a conclusion on the definition of management experience. 

"I... I..." I what, Aaron... what? I was screaming at myself internally as the adrenaline spiked and a panic the sorts of which I was unfamiliar with set in. For being such a simple question, I was locked up, unable to respond. So, again, I answered with a, "I don't know."

Last week as I presented to a wonderful, intensive program about employment for college aged individuals put on by Easterseals Arkansas, a person asked me about interviewing skills and the above story was the one I gave. I had never given the nuts and bolts of the interview in how I overthought simple questions which ended up with me giving non-answers. It might've been the worst job interview of all time, but as I ended the story, I told them that, somehow, I got the job. Once I had the job, I was a model employee and it turned out I had amazing skills at sales. 

Interviewing is an important part of employment, and it is one I've always struggled with. I always try to know all possible answers in advance, but when a question that is asked that is unexpected, it throws my whole system off. Think of my brain creating this wonderful, thousand-step dance, but to work it needs to have every step preceding each step to be the artform that it is. However, I doubt any amount of planning can truly let a person nail an interview on preplanned answers.

A follow-up question was, "Any advice on interviewing?" and I didn't know what to say. I wanted to give the perfect answer. I wanted to... and then I realized that such a profound question, this question of an event that all in this program will go out in the world and have to navigate, was much like a job interview for me. I overprocessed, I wanted to be perfect, and as I relayed that I also said, "Here's the thing... about the only thing the managers at where I interviewed noticed was my enthusiasm. I might not have had all the words, and I may have just said 'I don't know', but they picked up on my passion for the job. Don't lose sight of that should something go amiss in the interview. While managers may not say it, I firmly believe they will pick up on passion and enthusiasm so if you want the job, they will, I hope, see it and that will work in your favor.

Was that the right answer? I've wondered that for an entire week, but I know it to be true, and I hope all managers out there have that ability to see that an interview doesn't define the employee. For those that have interviewed me, I hope they'd agree.

The Cause

I got into my car fending off tears. These weren’t tears of sadness but rather tears of supreme… supreme what?  

I pulled out of the parking lot and headed north. I was leaving Little Rock as I spent the previous three days presenting at various Easterseals Arkansas venues. This was my first time back to presenting as if the pandemic hadn’t happened. It was… it was something I forgot.

As Little Rock disappeared in my rear view mirror, I kept reflecting on this feeling I couldn’t define. Tears were still trying to make their presence known as I tried to maintain my composure. I tried to figure out what I was feeling, and I knew the almost four years of not presenting to live audiences had made me forget what it was like to see the “ah ha” moments people in my audiences have, but it wasn’t that. It couldn’t be, this feeling wasn’t about what I did, and that’s when I figured out that this wasn’t about me at all, it was the people I met.

Over the past three days I had met hundreds of individuals and their questions had amazed me. The smiles, the motivation, and most of all the courage. From presenting at Easterseals Arkansas’s school, to presenting to their program to prepare a person for employment, the questions I were asked, and the stories of those that offered them touched me greatly. The tears were in amazement of the human spirit, and I once again realized the gigantic need that exists out there. 

Some of the questions I got asked were, “who was your biggest supporter?” 

“What is it like on race day for the Indy 500?” 

“What was job interviewing like?” They loved the story of my misadventures on this one!

And the question that hit me with every force of emotion possible, “how did you keep your dream alive when people told you not to follow them?”

As I got halfway home, and crossed into Missouri, I began to understand, once more, that the thing that motivates me are the people I present to. I tell my story, but when others get the courage to speak up, to share their struggles, hopes, and dreams, well, I know it’s easy for myself to do so but the courage it can take for others to do so is awe-inspiring. 

It’s been several days since I returned home, and I’m still in awe. It is such an honor to have been invited to present, and I can’t wait until I get the next chance to share my story, and in turn to hear others hopes and dreams. 

Alias

“I don’t think you’re on the autism spectrum” said the man that was now at my author table. It was 2009, it was my first book signing event, and he explained that a person with autism wouldn’t be able to have a public function like this. Thankfully, I was armed with my concept of Alias and I explained to him that, at that moment, I wasn’t Aaron Likens but rather Aaron the author guy. More was said, and eventually I’d present at his masters teaching course at Lindenwood University, but that day I learned the power of the concepts I put forth in Finding Kansas. 

The power of Alias can never be stated enough. I am incredibly shy and quiet, but when playing a role I can be outgoing, such as presenting on a stage. I’m often at a loss of words with which the ease of presenting is now for me, and yet a simple phone call creates an anxiety to which I will do all in my power to avoid using the phone. 

Looking way back in my life, Alias was present in school. Again, I was shy and quiet, but my second-grade teacher would have me be the host of the flash card game, or the states and capitols game, and suddenly words came easy. 

Later in life, employment was the same way. My third job was at a video game store and I had no problem selling things to customers, but trying to socialize with my coworkers always ended in failure, if it were attempted at all.

The concept of Kansas from yesterday can certainly aid in an Alias being formed. For us on the spectrum, we may know more than most about whatever subject our Kansas is, so socializing in the realm of that topic becomes easy, and if there’s a task to perform for that subject, an Alias can quickly form.

I’ve been blessed to have different Aliases from presenting to student bodies, to now working for the NTT INDYCAR Series where I man the flags and sometimes have some impressive guests to my office. During these meetings of celebrities, I’m still steadfast in my Alias and if I’m ever asked what I do outside of racing, I often get a statement I began with on this, “how can you do this? The pressure? The crowds?” Thankfully, I’m armed with this concept, and can explain just how I can do what most people would want to run away from. 

Kansas

 I'm doing a bit of a blog reset, which I've done from time to time, which means I'm starting anew in that I'll write as if everything is new. I'm also going to be sharing these writings directly to X and Facebook as both platforms now make it almost impossible to get traction if a link is going of their platform, so for now I'm going to start a small series of my five most important concepts...

When I started writing my book, I had no idea I'd be creating concepts that would make it easier for others to understand the autism spectrum. The title of the book is Finding Kansas and today I want to start a series of my five most important concepts and to which the concept of Kansas is #1.

For those on the spectrum, we will have an area of defined interest, knowledge, or an activity that we will do to the exclusion of everything else. Sometimes this works great as I've been waving a flag since the age of three and I made it to being the chief starter of the Indianapolis 500! Other times, well, maybe I should've been doing homework instead of waving a checkered flag to cars driving by near where I lived. 

That's an activity, but often times, when our defined interest or knowledge, we will do whatever we can to steer a subject to our intertest. Now, take this small bit of knowledge about having this area of defined interest or activity and leave it at that. How would you describe that to a person? How would you relay that to a person that doesn't know about autism? How could you put it into words that will make them understand the need? Enter, the Kansas concept.

What if you could only speak and make sense of the world when you were within the borders of Kansas? When you're within the borders you don't walk, you glide on the verge of flight. It just makes sense, you don't over process things, facts are facts, and all makes sense. Now, venture off to whatever state you want to be the opposite of Kansas, and things don't flow. You're asked a question, and you have the answer, but you think, and think some more. The other person gets a bit antsy and says, "come on... think harder!" to which thinking harder never results in anything beneficial when under the gun of the question, and you say, "I don't know." You had the answer, but processing for us on the autism spectrum can take longer. This does not imply that we are slow, far from it as we are processing a world of a fourteen-sided chessboard and trying to calculate an infinite number of moves.

Growth can happen in Kansas. When the clattering of the sound of life is reduced, things can make much more sense. My second-grade teacher knew this, somehow, years before Asperger's was a diagnosis. She used my love of auto racing to springboard my interest in the world. By asking where the track of Silverstone was, I took an interest in learning about new places, cultures, and she opened my eyes to the world around me that wasn't simply a racetrack.

With each year I am on this Earth, I grow more astounded by the power of Kansas in my life, and I love hearing stories from others that found their way through their Kansas. An important thing about this concept, one of which I didn't know when I wrote my book, is that "if you've met one person with autism, you've only met one person with autism." What I just put forth, might be opposite for the next person you come across. This, too, makes it so confusing for those that don't know or understand the autism spectrum to grasp what it all means, but through concepts I hope that it becomes just a bit more clear.