2016: The Difficult Year

I typically love writing year end reviews but I don't know what to make of this year. I did things that few will ever get to do so this year should be a great one, right? And yet, there were many events that were just downright dreadful.

I spent last week writing and deleting, writing and deleting, and writing more and deleting it because I don't know what to make of this year. It isn't easy to come up with the numbers of this year. It isn't easy to know how to end this year on my blog.

I'll try and come up with something that gives perspective to this year, but I do know I hope 2017 doesn't have the dilemmas that 2016 saw in my life.

To Go Live

Tomorrow night at 6:30 Mountain time (12:30AM GMT on the 21st) I'm planning on broadcasting my presentation from Gordon, Nebraska on Facebook using Facebook Live. I'll keep it up on my page for a couple days but then it will be taken down. My page is https://www.facebook.com/AutismAmbassador/

To Be Ambushed

Growing up I watched a lot of news and many times I heard the reference of a “Mike Wallace ambush”. This, of course, was 60 Minutes’ Mike Wallace and I’ve been trying to come up with a situation that you could relate to on what processing is like. I’ve come up with several things in the past but nothing compares to the situation you’re about to read.

Processing can take longer for us on the autism spectrum even if it’s a simple question such as, “What’s your name?” To the outsider this seems a simple question, but adding to the previous post about being interrupted it isn’t as simple as it seems. Now, the struggle has been to let you in on what it feels like so let me introduce you to a new gameshow I’ve created. I’m calling this “Street Corner Millionaire” actually, that’s a lot of money so let’s call it, “Street Corner Thousandaire” just in case any person would win. How is this game played? It’s simple! All the contestant has to do is answer one simple trivia answer. Easy, right? Here’s the thing, however; the contestant doesn’t know they’re going to be a contestant. Contestants will be chosen at random in a downtown area of any major city and all of a sudden a host with a confident voice and a crew consisting of three cameras will ambush the contestant to be and the host will rattle off, “I’m and this is Street Corner Thousandaire!” At this point the contestant will be a bit confused but still have their wits about them, “We’re here at the street corner of Elm and Main and let’s choose this person…” Now the host quickly turns to our unwitting contestant, “You have two seconds to answer this question for $1,000. Name me three parts of a door.” A door? Parts? A door has parts? “Oh, sorry, time’s up! You don’t win $1,000 but here’s a consolation prize in a stopwatch that counts to two so you can remember your short lived time on Street Corner Thousandaire!”

I doubt many people would be able to be successful on this game show I’ve created because by the time the person realizes a question has been asked they will just be at the part of processing that there are cameras there and that a game show is actually being filmed. They will be aware of a question but will not be able to process the fact that they need to answer. Under a normal environment a person might be able to, in ample time, give three parts of a hinge, a frame, and a knob but under the pressure and lights of the ambush I doubt you or anyone could respond.

This is what daily life is like for many people on the autism spectrum. The answer is there but the ability to get the information out in a timely manner is now. Processing takes place and it takes longer and the anxiety of knowing an answer is expected just compounds the amount of time it takes to process. In my gameshow example the same would be true; you’d be trying to think harder to come up with an answer but the lights, the host, and the prospect of $1,000 would make it impossible to get the proverbial car from spinning its wheels going nowhere to making forward progress.

I had to create an extreme example scenario to illustrate the difficulty we may have. Most if not all would struggle on my gameshow but this is the life many people in school deal with each and every day. My gameshow was designed for the contestant to fail whereas a school is designed for a student to thrive. The student, however, is only going to thrive it there’s understanding and it can be confusing for teachers to understand that the person may know the three parts of the door, and may be able to talk in great length about how all the mechanisms work, but under the right environment such as the ambush the ability to process and respond is not going to be there.

Nebraska

One week from today!

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.

To Advocate

            Advocating… Before I started with Easter Seals Midwest I had no idea what it meant and when I began, well, I still didn’t have a full grasp of what it meant. I heard all the time of, “self-advocating” but what does this mean? What would it accomplish? The years have gone on and it still didn’t make sense until a presentation I had a few months ago.

            I finished my presentation on the campus of the University of Missouri and in the questions segment a parent asked me, “My daughter is being picked on and bullied in school and what would you say she could do?” The daughter was sitting right beside the parent so I turned my vision towards her and took a breath and all of a sudden the concept of advocating made sense. I’ll try and give you what I said in quotations…

            “School was rough for me, but I never was truly bullied that I know of but I have had situations where I felt belittled and mocked. This isn’t to diminish your challenge now but you’re seeing me up here on this stage today advocating. I may have spoken to tens of thousands but that isn’t the goal here. I’ve had instances where a one-on-one conversation made a drastic change and that’s the goal. My job title may be Autism Ambassador but really anyone and everyone can be one. Your story isn’t my story and my story isn’t yours and that’s what the world needs to know about the autism spectrum.”

            “To those that bully you all I can say is try and advocate for yourself. Make the attempt to explain to them who you are and why you are. Will it work every time? I’d be telling a lie if I told you it would, but here’s the thing; if you reach one person. Yes, if you reach just one person then maybe that one person reaches another that reaches another and what all this means is that you changed the world! Again, some people aren’t going to listen, some won’t care, and should this happen you’ll have to try again down the line but don’t lose hope. I believe that most people are good and want to learn and you have the power to do exactly what I’m doing today.”

            My voice was quivering when I finished that answer because I realized that what I said wasn’t just a filler answer but the honest truth. Anyone and everyone has the ability to change the world and it doesn’t matter if it’s to an entire student body or to one fellow student. How did the story end up with the daughter I spoke to? Her mom found my Facebook page and mentioned that the bully in question apologized to her and was now sticking up for her! This is the mission, this is the goal, and whether you’re a public speaker, a blogger, a parent, a student, or anyone that has any slight affiliation to the autism spectrum you have the ability to change the world. Truly, you do and if we want to get to the world where there is full awareness and more importantly understanding of the autism spectrum it’s going to take us all to advocate, to educate, and to generate the thoughts in others that will make more stories like that of the daughter that was in my audience. We’re in this together and as I told that girl in my audience we won’t always have someone that will listen, but it only takes one for us to change the world.  

To Socialize

There is such a contradictory nature to having Asperger’s. I’ve blogged about that before but in no other setting does this become apparent than the world of socializing. However, if you were to go back nearly 30 years and see me then you might not think there was a problem and therein lies the contradictory nature.

            The art of socializing with anyone my own age was lost upon me in school. Don’t get me wrong as I tried but I didn’t understand that a conversation, a true conversation, is one like a chess game instead of a tsunami. A true conversation one moves, the other reacts, and thoughts and ideas are shared. My conversations were a tidal wave of info that the person that I was speaking to may or more than likely not have cared about. I didn’t understand why those I talked to wandered off. This left me with little options and at recess in school I could often be found by the teacher as either she did understand what I was trying to say or maybe I had a captive audience.

            The years progressed and the social dynamic became more complex and I was still as oblivious. I still had this yearning for communicating but each time I tried it ended in an abject failure. It got so bad I did everything I could to convince my parents that home schooling was the answer because I just couldn’t understand the social world of school. My peers were talking about music, movies, and other 6^th grader stuff when I wanted to talk about racing safety, weather extremes, and the history of The Manhattan Project. There wasn’t much common ground between the two and there were times my classmates did enter my world but quickly the influx of data overload pushed them out. I never made an attempt to enter their world.

            In 1999 I got my first job and thankfully, and this story is in Finding Kansas, and there was one person that got me. I felt comfortable having a conversation. It was odd, to be honest, to be talking more about bowling styles (the job was at a bowling alley) and critiquing the jerks of bowling instead of talking about my areas of typical interest. Shortly thereafter I started bowling in the adult leagues with my then girlfriend and I was thrust upon a team that didn’t know me and I didn’t know them, but this was a bit easier to deal with then the open world because we did have a shared interest and that was bowling. While it was easier the mainstay of my social life remained with me

            Mainstay? A conversation requires processing and in all my social woes growing up and the times I said the wrong thing I learned to simply not talk. Isn’t that logical, though? If you were to try something and fail, and try again, and again, and several more tries and failure kept happening wouldn’t you do what you could to avoid the social scene? To socialize is to put myself on the line because when it goes bad, or at least back then before I understood what I do now, I would hate myself. Why did people just leave? Why wasn’t I interesting? Why wasn’t I good enough? With these thoughts of self-doubt the only outcome of a social situation was, indeed, failure. When there was a conversation happening at bowling that I was involved with and there was a witty remark I came up with I’d sit on it and weigh the options on if I should use it or not. By the time I decided it was the best thing in the world for me to say the conversation had long passed and I would sulk back into the world of listening instead of actively participating.

            Each person with Asperger’s could write a chapter “To Socialize” and I can almost assure you it would be different. Put forth in this post is my story. Others, if they had a similar school experience as I did, may be convinced that socializing is something that just isn’t worth it. Others, with early intervention and therapies, may have learned the reciprocal nature of a conversation much earlier than I and the length of difficulties may not be as long as mine. That’s the thing to remember, if you’ve met one person on the spectrum you’ve only met one person on the spectrum and the world of socializing is one that this will show through the most. However, I believe that to socialize is to be human and even in my darkest nights when I told everyone I was convinced it wasn’t worth the effort and that I didn’t care deep down beneath all the layers of defense and all the layers of telling the world I didn’t care was my true self that looked at the social world in awe and wanted for, just for one moment, to be a part of that world.