Why I Twirl

Last week I talked about the school presentation I had in December and one of the questions a person on the spectrum asked which was wanting me to describe why we on the spectrum may have had fidgets or other movements. While I can't recall what I said word for word I can do my best.

"Great question! Why might we have hand movements that some may consider 'odd'? I can only answer for myself but during this presentation I've been having some hand movements that might just be odd according to some. Have you noticed? No?! Well, when I'm just a tad bit nervous in public I'll twirl my belt loops. It's not very noticeable unless you know what you're looking for, but why do I do this?" 

"It's the way I regulate my anxiety. If I don't do this the anxiety bubbles up and up and it becomes overwhelming to the point that I can't focus on what I need to focus on so this very small movement and sensory input in my fingers allows me to sort of... think of it this way... you're extremely hungry and there's the world's best soup in front of you but it's just too hot to eat. You know the feeling, right? The feeling of soup that's too hot that makes your entire mouth feel like it's on fire. There comes a point, though, that the temperature of the soup gets to the point that it's tolerable and not that overwhelming heat blitz that can't be handled. That's what the belt loops do for me; they lower the temperature of anxiety."

"I have another hand motion and when I was in school kids would, sadly, make fun of it. I do this when I get extremely excited, and I do try not to do this in public but there are times where quite simply I'm going to have to." I then proceeded to show them which is using both hands moving right near the speed of sound either by my ears or cheeks. The room was silent as I continued, "That motion allows me to feel the excitement and start to purge the excitement. Without this the level of excitement is going to grow and grown until it feels like I'm going to explode. I don't know why it works, but it does, and it's my way to manage the emotions that may come during the day."

"It's unfortunate that some get made fun of for such things. Do I wish I didn't have to do this dance of the fingers? Yes, I do but wishing it away won't get rid of it. If you only knew how much strength it took for us on the spectrum to get through a day! Easy things you take for granted may be difficult and exhausting for us and each of us on the spectrum may discover little tricks such as twirling belt loops as a way to help us get through the day."

I've been asked this type of question many times and it is a booming sound of how important these presentations are. I dearly wish that, when I was in school, there had been someone that was able to translate my quirks like I am able to now. That little bit of understanding may have avoided so many years of hardship. I'm grateful that I get this opportunity now and it's never lost on me how much gravity is in each question that begins with, "Could you explain why we..."

To get Interrupted

 This title could be taken as if I'm talking about an interruption as if it were to be an interruption akin to being talked over but that’s not the interruption I’m talking about. For myself an interruption, as defined in this post, is any time I’m doing one activity and by any means get forced to go onto another. This could be something major such as a fire alarm but with minor events there may be a major misunderstanding in the way I respond.

For those that know me you will know that, when you say my name when I’m in the midst of something, I’ll give a response of, “WHAT?” It sounds as if I’m angry but here’s the thing; I’m not angry at you but rather I’m flooded with emotions of what to do and confused as to why the proverbial train stopped. Proverbial train… Let’s run with that…

Let’s take the Shinkansen, better known as the bullet trains of Japan. They’re known for their efficiency and high speeds and let’s say you’re on an express train from Tokyo to Osaka. This, being an express train, has no stops between Tokyo and Osaka and when you’re on this train you’re expecting a quick journey. Let’s say, halfway through the trip, the train begins to slow and come to a stop at a station and the doors open. This isn’t supposed to be happening. There would be confusion among the passengers. Why did you stop? When will you be going again? Will you be stopping again? Of course, the passengers will become irritated during this delay because it wasn’t planned for, nor was it expected. This is what daily life with Asperger’s is like.

In any thing I do, when I am doing it, I am like that Shinkansen express train. I am hyper-focused on the goal and when an unexpected interruption occurs, even mildly, my response is like the passengers on that train example I gave.

I mean no ill-will when I give a response that sounds angry. I do know I sound angry and when I mention this aspect of the autism spectrum to teachers I often see, in unison, each person’s head nod in unison because this is something we share. It’s easy for us to have tunnel vision and only see what it is that we are focused on. When I was in school if I were working on a worksheet, I’d get irritated at annoyed at any person that spoke to me. Why? Let’s go back to the train example. Let’s say the efficient Shinkansen wasn’t all that great at getting up to speed. Once up to speed all is well but getting up to speed is a challenge. That’s the way my brain is; once at speed I can focus with perfect clarity but that one interruption can bring about a complete change in ability to focus or achieve a task hence why the unsuspecting interrupter is going to get what sounds like an angry answer.

This post isn’t to say that interrupting a person on the autism spectrum should be avoided at all costs. Quite the contrary; this post is to highlight the reason why you might get a response of annoyance and that we aren’t truly angry at you, we may just be angry at how difficult it is for us to change speed, to adjust our attention, and our fear of being unable to once again achieve the speeds we had been going.

There's Still Magic

Since the beginning of the COVID-19 pandemic my in-person presentations have been almost nonexistent. While health and safety are of the utmost importance, I have been filled with sorrow on the lack of presentations I've had in schools. Someday I hope you get the chance to see one of these presentations because if you want true hope for the future all you have to do is witness the magic that happens.

My school presentation lacks anything remotely considered flashy as it's just me, speaking, for 22 minutes and then the magic happens as I open the floor for questions. So often I have to fight back tears at the well thought out and compassionate questions from students that aren't on the spectrum, but then the waterworks are almost impossible to hold back when a student on the spectrum advocates for themself. 

Last month, right before the Omicron spike, I got the chance and absolute honor to return to a school that I had been an annual tradition. On that day, while driving to the school, I was immensely worried as to how the presentation would go and that's in regard to not just my ability to speak but what would students have the same level on inquisitiveness? Would that same level of compassion that I wish could be bottled up and when you're having a bad day you could open the bottle and know that there's so much good in this world? 

There was a new principal at this school as the previous one that had booked me for, gosh, eight years or so, so she had a hint of skepticism as to what was going to happen at my presentation to the whole 6th grade as I had no PowerPoint, no props, and no "flash". I was skeptical too and I tried not to show it as I got introduced to the 250 or so students.

Presenting is much like riding a bike and while my comedic timing was a tad bit off to begin the rust was quickly shaken off. However, I had no idea if I was holding the audience in the palm of my hand of if they were waiting to toss me aside and get back to their regularly scheduled schoolwork. The masks made it impossible to know and when the 22nd minute ended I almost pleaded when I said, "And now it's your turn. I have no idea what you know or want to know so the floor is open, and I know no one ever wants to ask the first question so..." and before I could finish the almost begging for questions the first hand was raised and the magic was there.

"I heard people on the spectrum like routines, is this true?" 

"I know several of my classmates have Asperger's, how can I be a friend when things get tough?"

It was question after question of pure magic. Truly, and I know I've said this, I wish you could witness this for just two minutes. In the midst of our currently chaotic and unpredictable world I'm so glad to know that kids are still as kind as I found them to be in my very first school presentation. I was worried as our world speeds up with all of our technology, cynicism increases, and we learn of a new Greek letter every two months which may or may not change the way we go about our lives kids are still wanting to know about this thing called autism and from that the future seeds of understanding will be beautiful. 

Leaving the school that day was almost like some major life event that was coming to an end because there's no telling when my next school presentation will be. I know it's needed, and I know there are thousands upon thousands of kids out there that have the same sentiment I had when I discovered writing as a medium to express myself when I wrote, "All I want is for someone, anyone to understand me and when that happens, I might just be free..." I know this to be true because the one question that almost knocked me onto the floor was when I called on a student that had their hand up for at least a dozen straight minutes, asked after 10 seconds of gaining their composure, "Yes, um, I, I, I fidget my hands a lot and some kids have made fun of me. Could you explain what it is and why we do it?" I'll remember that question, and the absolute silence of 250 sixth graders as they waited for my answer, forever.

Why I Don't Watch Shows Involving the Autism Spectrum

With a title has straightforward as this one you may think I could have a vendetta against shows like The Good Doctor or Netflix's Love on the Spectrum. There's no vendetta though, nor any opinion on the realistic (or not) depiction of the autism spectrum. Instead, it's that I'm simply not strong enough.

My girlfriend, several months ago, asked what I thought of The Good Doctor, and I gave a non-answer. How could I give one when I've never seen an episode? I told her what parents at my presentations have thought of it, but I was unable to give a first-hand answer. Then, last week, she asked what I thought about Love on the Spectrum, and again I was unable to respond. Atypical may have come up early in our relationship and then, like the others, I was unable to answer. I think she asked me at some point in time why I hadn't watched, and I gave a closed off answer that teetered on truth but wasn't the reason. I knew the reason, but I couldn't vocalize it so, as I've done so often, I'll write about it.

As mentioned, I have nothing against those shows. The reason why I don't watch is that I'm trying to protect myself from emotions. Way back in 2011 I was on a panel that discussed the movie Adam and while watching that movie I felt extreme feelings of compassion and empathy. I felt similar emotions while watching Temple Grandin but seeing how I presented on a panel with the real person that seemed a bit, well, different. Back on point... While watching and then discussing Adam there were those two strong emotions and typically, I can watch forms of media without any spark of emotion whatsoever. However, if I can relate to a scene, or a struggle, the feelings compound and it's downright overwhelming.

The misconception out there is that those with Asperger's fully lack emotion. I laugh, and then want to cry, when I hear this because it's not based in reality. What is true is that I'll do what I can to avoid situations that will entail an emotional response, or I will do my best to conceal the emotion because emotions often cause more emotions which bring about more and that is just so tiring. Also, because I believe emotions are felt at an unfiltered level meaning that instead of a scale that's zero to ten mine is zero and then maybe a nine but most certainly a ten. 

With no shallow or middle ground, the emotions that are triggered become a tidal wave. If emotions of outward empathy and inward reflection are spurred at the same time it is an overwhelming mess. With the "everything is now" memory system I have, when a memory is conjured up by relating to a scene from a show, the emotions I had at the initial moment of living it are brought back to the present. And, since I had a hard enough time the first time I felt something, it's even more difficult many years later with now interest being added to the initial emotional debt.

Perhaps I'm missing out. Maybe a blog of "life on the other side of the film" would be a great project to do in reviewing and relating to the various shows out there. How based in reality are they? Could they do better? I know I could provide insight to this, but right now, as I think about Adam, I can still feel the helplessness in the situations the movie depicts, and it gives me an image of drowning in emotions. Maybe there are others out there on the spectrum that share my extreme hesitation to take the media plunge and watch. The odd thing is that reading books doesn't have the same impact on me. I find this curious, but perhaps that's because I was an author first and it's a media of the mind and not of someone else's interpretation of a script.  

To close, that person you may know that is avoiding a movie, or genre, perhaps like myself with things involving the autism spectrum, there could be a silent reason as to why they will do whatever they can to steer away from it. I've known this about myself for almost a decade and couldn't describe it to anyone. It took me a decade to get the bravery to say way so if you don't get an answer as to why, perhaps it's too deep, too personal, and they too would want to avoid the tidal of emotions that can be brought about by seeing a struggle they struggle with on the television screen.

"Bro, do you even lift?"

 I've wanted to do this post for about a decade but just never got around to it. Maybe I didn't want to embarrass myself, but it's just too good of a societal misinterpretation to pass up as the troubles with literalness of figures of speech, idioms, and other dual meaning phrases is on display here.

 
Back in 2004 I was a professional gamer before it paid anything; in other words, I was jobless. However, I was extremely talented at most of the Xbox racing games which were Xbox Live enabled. Truly, this was incomprehensible to me in that I could race other people from around the world and the first game I took serious in becoming #1 in the world was Toca Race Driver 2. The game itself deserves a secondary blog post in all that it's done for me in terms of friends and the ability to have a conversation, but today I pick up the story on any given start at the A1 Ring.

I'm starting first. I need to win this race to maintain my rank of the top racer in the world. I look forward to turn one and its evil steep slope into what I considered the biggest crash inducing turn one in all of racing. Since this is a videogame, many people simply don't care, or aren't skilled enough, to get through turn one cleanly. It was commonplace for 12th place to try and take the lead in turn one by, well, forgetting to slow down for turn one and the end result was primitive graphics showing a bunch of broke race cars and a whole lot of angry voices yelling at each other and it was never anyone's fault, or the other favorite go to excuse was, "I didn't hit anyone on my screen!"

Anyway, in-depth racing talk aside, the common result of such incidents was someone saying, "dude, just lift!" meaning lift off the accelerator. During this same era an early internet meme started popping up with the words sometimes changing order of, "Bro, do you even lift?" This could only have meant one thing, Toca Race Driver 2 had a supreme reach on the internet and the struggle of turn one was real and known by many.

Flash forward to, and I'm almost ashamed to say this, November of last year. Something spurred my curiosity of the Toca game, so I looked up information and then I looked up the meme and I was shocked; its origin wasn't of Toca at all but referring to weightlifting! 17 years of knowledge were instantly thrown into question and another bit of the English language confused me once more.

Non-literal words, phrases, and idioms can be extremely confusing for those on the autism spectrum, and it can be even more confusing when we can actually use the words in something that makes sense. I should've been suspicious of the fact that Toca had such a wide reach in society, but "do you even lift" made sense as turn one of a race looked more like a bowling alley than a racetrack.

I spent almost two decades unaware of my misinterpretation of the saying but since then I haven't been able to shake the words from my thoughts when I see a lap one turn one incident on iRacing. It works, doesn't it? When someone from last goes through the field like a perfect strike in bowling the question to be asked is, "bro! do you even lift?" Surely this makes more sense than anything bodybuilding related, right? 

Right?

Sometimes I like my understanding of words more than the actual meaning, but when the truth does come out, we can be oh so confused and have no idea where you got your understanding because ours makes much more sense.

Article from last year

Before the NTT INDYCAR Series event at WorldWide Technology Raceway in Saint Louis last season, Benjamin Hochman of the Saint Louis Post Dispatch wrote this amazing article about me and with just a little over one month before the start of the 2022 INDYCAR season, and the fact I’m counting down the minutes to the first green flag, I felt it appropriate to 

share this amazing article.

Mining for gold

So many people do throw back Thursday so today I wanted to share this video back from the end of 2020 about autism and employment that I was a part of.

“This has been a joke of the EAS”

I was in the middle of a race on iRacing, which is a motorsports racing simulation game, when my phone did the emergency alert system noise. The noise so often now is associated with an amber alert so there's a bit of a desensitization to the noise from, say, when threat of nuclear war with the Soviet Union was a daily fear, but as I looked down, I didn't see the usual "amber alert" message but instead "Emergency Alert." That can't be good" I said aloud to no one.

Special reports and civil defense sirens have always invoked mortal dread in my heart. I, for one, don't think there's anything scarier than the intro to a special report on NBC as worst-case scenario thinking runs amok when that's heard. 

I used to be much worse at the worst-case scenario thinking. Here in Saint Louis the civil defense sirens are tested on the first Monday of the month and each time at 11AM on those Mondays my fear of tornados, bombs, or perhaps an alien invasion of Narwhals from Neptune were going to change life as we knew it. Then, I'd see the time and realize that all was well and we wouldn't be overthrown by our new overloads from space.

The race was quickly over and I was able to see the alert. "Gotham City, Missouri"? This sounded more like a "same bat time, same bat channel" tease at the end of a 1960's Batman broadcast. The purple/green color scheme also seemed a bit of either a riddle or perhaps a joke, and then the license plate was also in the realm of fantasy. However, questions still remained.

Was this legitimate? Had there been an extreme event with someone attempting to recreate a Joker incident from one of the later movies? There was no indication that this was a test so the mind could go 1,000 different directions as to what this was. Also, the link provided went to the Missouri Highway Patrol Twitter page furthering the legitimacy of the alert. 

About 15 minutes later the EAS went off again saying the previous message had been a test and that the test had been concluded. There was no danger, no 1978 Dodge purple and green Dodge terrorizing the state of Missouri. All was well. 

I haven't seen a story on if this was an intended test or a mistake like the 2018 North Korea missile alert in Hawaii. I did see a story on Facebook by the local NBC affiliate last night and the comments were all over the place. Those that said they were worried were instantly chastised by other commentors. I think back to a decade ago when the fears of every alert were paralyzing, and I have no idea what I would've done with an alert like the one that was given yesterday. Anxiety of this nature wasn't a choice and the "flight or fight" mechanism, when engaged, isn't a simple off switch which would've made actually seeing that the message wasn't real based in reality difficult or downright impossible.

Those that were confused or concerned shouldn't be ridiculed. I used to be that way, still can if you go back to the blog from last week, and furthermore do we want to desensitize people to what an alert means? Someday a person might be in a situation that the message on the screen labeled "Alert..." might save their life but if they think it's just another "joke of the Emergency Alert System" then they may not heed the lifesaving advice and that, truly, is the danger of whatever happened yesterday across Missouri.

                                                         

Torn Memories

A way I describe my memories is through what I call the "associative memory system." Think of it much like an interwoven spiderweb and everything is connected. This can play out several different ways with one being that the Olympics are a great organizational tool for remembering where I was when they were. However, while dates are good mile markers the biggest tool are physical items and while my girlfriend assisted cleaning out the guest bedroom yesterday, I came across a piece of clothing I very well might've died in.

Seeing it instantly brought me back to Marshalltown 2007. I was race directing and flagging a kart race at the now gone Iowa International Speedway and I've got to tell you, seeing the clothing allowed me to remember that the day before I gave my shortest red flag ever with about 20 seconds worth of red flag conditions in a practice because a herd of deer were galloping down the backstraight. However, I could hear my words in the driver's meeting as I hoped it would be a safe weekend, "Okay everyone, we had a red flag for deer yesterday and as we come to races today let's keep that as the only red this weekend. No one wants to be the cause of a red flag." A big case of irony was about to play out.

I held the clothing in my hands. I could see the cut lines from where the paramedics and ER staff had cut the suit. This clothing was my race suit, and I would often race just the final race while someone else filled in on my duties. I had had one practice session and the track was exceptionally bumpy but had a fun mix of corners. Anyway, racetrack talk aside, during the race I was doing great considering lack of practice compared to everyone. There was one corner that I loved; it was a high banked bowl hairpin. Throwing a kart into that corner was a rush and lap after lap I attempted to make a pass for fifth in the corner. I was so focused on the battle that I didn't really notice the diminished braking power I had. Perhaps it was only a couple corners that I had warning, but as I thought about another attempt at a pass going into this hairpin my brain had a hard time registering what was going on in my world.

"Should I throw it out?" has been a question I've asked many times. Because my memories are so tied to objects would I be able to "move on" from the feeling of helplessness that I felt in the couple seconds after not realizing what was going on in my world? It's hard to describe what it is like to expect one thing and have it not happen. When you press the brake pedal in your car you know you're going to slow down. But what if you don't? Then what? That's what I was faced with and I turned the wheel hard left trying to spin and avoid the kart in front of me. 

Sliding into the hairpin I almost had it spun. The good thing was I didn't collide with the kart in front of me, but the bad news was that I went into the hairpin flush which sort of acted like a point and shoot slingshot. 

Memories are funny; I've found that remembering the good times is almost impossible but the times when we are pushed to the extremes, well, those moments can live on forever. 

The next two seconds or so went on for what seemed to be months and months. Every regret, hope, idea, and dream I ever had was played out as I stared at the hog fence in front of me. This hairpin corner didn't have much run-off which meant the solid objects that could be hit were rather close to the track. I had enough time to think about the second bit of irony that I had asked the track owners to put the plastic barriers often used at kart tracks in front of this semi-solid fence. There was a gigantic stack of them just out of line of sight as the fence was getting closer and closer. Then, I made contact.

Hog fence, which I'm 99% sure is what I hit first, was in panels of a much thicker metal than a chain-link fence. The pits were on the other side of the fence, so they didn't want any karts making it through the fence hence the overly strong tactics, but at the same time it made for a sickening impact as I struck it, breeched it, and made my way into the chain link fence.

My memories are fragmented greatly after the impact. One thing I firmly remember is a man by the name of Noe running full speed at me. His pit was the other side of the fence but that's all I can remember of the world until my memories pick up with me screaming. I wasn't choosing to scream, well, my conscious self wasn't; think of it like waking up from a dream during the day. The fence had done a number on my head, hand, and lower legs and there was no doubt to anyone that saw it that I was taking a trip to the hospital.

I had no lasting injuries from the crash. The concussion took about a month and my hand couldn't fit into my bowling ball for about a month as well, but all things considered I was lucky. Lucky? The luck factor is why I keep the suit. It may be sort of morbid to keep a suit I almost died in, but here's the thing; that weekend I had forgotten my helmet at home. My helmet was much like a karting helmet with no protection given under the chin. I had to borrow a helmet and the helmet I had used that day was from someone that had given on oval tracks in stockcars which had an extra lip under the chin. The first place of my upper body to connect with the hog fence was the lip and had it not been for that the fence would've made direct contact with my throat. Survival, in that case, would've been unlikely.

There are all sorts of items in my house that may look like junk, or something oddly irrelevant, and then there's a race suit that has been cut wide open. While seeing it may bring up a recall of staring at a fence in the most helpless of situations it also reminds me that I had something else in store for my life that I couldn't possibly imagine. So, if you know a person on the spectrum, be on the lookout for trinkets, knickknacks, or what you might consider junk because it might be the connectors in their memories of perhaps a favorite day, a day that was transformative, or in my case, an item that reminds them of just how lucky they are.