A World’s Collapse

I’ve always had dreams that were a little too realistic and a little bit too much self awareness in them. Recently, as morning nears, my awareness of the world within the dream coming to an end is a bit too high. 

I don’t know how many others experience anything like this, but a couple times in the past week I’ve had a mourning session in the dream preparing for the loss of the dream. It’s odd to have those in the dream aware of their pending demise back to the depths of my subconscious, but that’s how it’s been playing out. 

At presentations I’ve heard from many on the spectrum that share this same heightened sense of dreams. While I’m not sure if this is or isn’t a widespread thing, I can say it’s a bit annoying to feel as if a world has collapsed each time I wake up. 

I hope tomorrow morning there isn’t this sense of loss. The figment’s final moments aren’t in dread, but of a goodbye that’s definite and final. Going throughout the day there’s a nagging tug on the subconscious level that’s aware of the finality of those lost. I know they were just my imagination, but with the clarity of my dreams it always feels as if there was a true loss. 

A Chair

There’s this chair… actually it’s a recliner and it’s been with me since 1997. It’s old, a bit worn, and it’s best days have long since past. However, I’m not sure if I can let it go. 

There’s a new chair awaiting its turn to replace it. “In with the new out with the old” is not something that is easy for me. Items often hold a sentimental feeling for me that’s strong. It’s known that those on the autism spectrum may have, as the DSM says, “an inappropriate attachment to objects” but I argue that language because it makes perfect sense. 

I remember the day I got that chair. Okay, so it wasn’t supposed to be mine exclusively, but it’s the most comfortable recliner in the world. I got it three residences ago and it’s made every move since. Twenty-five years is an eternity in recliner years (is that a thing?) and it is, I think, the only thing I use on a daily basis that was with me before my diagnosis. 

You see, that’s the thing; it bridges every era of my life together. It was there in the before, the middle, the present, but now I’m not so sure about the future. The back of the recliner is so old the back cover is coming off exposing nails. I know it’s time, but how can I just let go?

I never understood the scenes on Frasier where Martin refused to let that old chair go. It was the plot line in several episodes, as Frasier tried his best to get it to its new home of the junkyard, but now I do. When you’ve had such highs, lows, and the mundane experienced in the same chair it isn’t just a chair, it’s a conduit for years, I mean a couple decades of life and as I sit and stare at it now, I can’t imagine it not here even though I know, for the safety of skin and cat, it should best make its way out of here so a new, fresh recliner can take its place and create a new life of memories. That’s much easier said than done. 

Decision Lines

I don't remember much from elementary school geometry, but one thing I do remember is the concept of a line. A line has a starting spot and then has an infinite path in one direction. Even back then I associated with this concept in terms of decision making.

Making decisions on a choice has never been my strong suit. Where to eat, where to go, what to watch, and any other smallish decision is often a long, drawn-out marathon of mental anguish. I've always been envious of others in the apparent level of ease that decisions are made. I mean, how does one just simply make a choice? It gets even harder when a choice has been made and then a change in mind occurs. 

It's amazing to see, for me, how others so effortlessly change their minds. Myself? That choice is much line a line in geometry that has been made in a specific place and time and the line goes for all eternity. How then do others deviate from this line? 

I've always been at a loss at how others proverbial geometry is much more a criss-cross all over the map of decision making. Any decision or conclusion I've come to has been an extensive amount of thought, and when a plan or choice has been made that proverbial line stretches forever, so if there's any conversation about deviation, it's much like trying to change something that always has, is, and will be.

This is another way to describe the difficulties in change. Even on things of the smallish level. Within a day there isn't just one line going one direction; it's a dance of thousands of lines and if one line gets moved, then all the other lines have to be reorganized and it can cause a cascading crumble that crashes the system. This is why things that are small can be big. This is why a small change at school can create much larger issues, and this is why a small change on the way to pick up some books can create anxiety that is difficult to understand.

Death, and the need to inform

 

Going back to a school presentation I gave at some point in time I was asked one of the most direct and precise questions.

I know it gets old with me saying this, but I wish you all could see one of these school presentations and the empathetic and compassionate questions that get asked. If you want hope for the future go no further than seeing 400 5^th graders wanting to know about the autism spectrum and their breadth of knowledge. In this presentation, though, I called upon a student and they asked, “Yes, would a person on the autism spectrum handle a death of a family member differently than a person not on the autism spectrum?” This would be a heavy question to be asked at any presentation be it to parents, law enforcement, but at this age group I knew my answer had to be perfect because I wouldn’t think questions regarding such a topic are common in a school.

In the flashes in my brain as I tried to formulate an answer I thought about deferring the question, but then I thought about the situation of the person that asked it. I didn’t know if they either had the diagnosis, realized they had the diagnosis, or had a family member that had the diagnosis. This made this such a slippery slope because I was also unaware of how many in the assembly had actually gone through this and the last thing I would want to do is upset anyone, but what if this; what if this person had either just learned from their parents or doctor that they had it or perhaps they connected the dots about and figured that they had it and what if sometime in the not so distant past there was a loss in the family and the reaction they had was, perhaps, a non-traditional response? If this were the case my answer had a lot riding on it because what if they had been mocked or ridiculed by a seemingly apparent lack of emotion and on top of that didn’t understand why they had the response they did? With my logic there was no dodging this question and it had to be answered in the most tactful and perfect way possible.

Have I mentioned I love school presentations? I do, but in the midst of a storm like this the love isn’t from the thrill of it but of the sheer importance of what my words mean. I deduced there was something of great gravity to this question as it was too perfect and too precise, but how to answer it? I played it out once again on what could lead to that question and I figured the best reason was that they had gone through it so I explained it this way…

I spoke to the whole group but my words were directed towards just one student when I said, “Can a person have a different reaction to a loss in a family? Most certainly and those not on the autism spectrum may go through the same thing, but for a person on the autism spectrum there may be an abundance of emotion or perhaps an apparent lack of emotion. Now here’s the thing; if you read enough literature on the matter or hear the news enough and hear a misguided expert you may read or hear it stated that ‘a person with Asperger’s has little to no emotions and simply doesn’t care.’ If you ever hear or read that know that this is false. We have all the emotions in the world but the catch is this. Our brains, from the part where we experience emotion to the part where we express it is much like a river except it’s completed clogged upstream and navigating from point A to the point where we can express it is difficult and sometimes impossible to navigate. With all that said can there be a different response? Most certainly yes, but emotions can be difficult to navigate and much more difficult to express so those around us think we don’t care when deep down we are hurting but have no idea how to tell anyone.”

With that answer given I could breathe again, but only just. I was on the brink of tears myself hoping my words had some merit and if my fears of why it were asked were true I hoped my words offered some solace and as the presentation wrapped up and I was driving home I couldn’t shake this question. I’ve lost count of how many times I’ve been asked, “My child has Asperger’s but they don’t know it. Should we tell them?” and I’ve always given a wishy-washy answer which I felt to be true. Each person is going to be at a different development stage and each person is going to take the news differently. Some won’t care, others will take it as a badge of honor, others may fear the label, but in it all, should a case happen like this question, and a person does seem emotionless in a time of a great loss, and those around ask, mock, or get angry at the behavior that person that has the diagnosis is going to be dealing with something much more than the loss itself. This isn’t to say the loss is going to be minimized; quite the contrary as for many days, weeks, months, or maybe even years the mourning process will never truly take place because that person is going to be stuck on the fact that they were told they were supposed to behave a certain way or have certain emotions when, in fact, they might have but didn’t show it. Now, if the diagnosis is confirmed and it is explained to that person and the family the whole sequence I described would play out much differently and perhaps a better support system could be in place as those around could just possibly understand that just because there is no outward emotions doesn’t mean the inside is hollow.

That student’s question is going to be with me for a long time. I’m going to play and replay it many times hoping I answered it rightly, but I also now I may give a stronger answer when asked, “should I tell my child…”

A Trip’s End

The sun has set on my road trip. It was a fantastic 17 day journey and a type of trip I have missed dearly.  

As a child, I’d wonder with awe about the open road. One of my favorite things to do was to scour the road atlas and imagining what the places in the various states were like. I usually laugh when I hear “people on the spectrum lack imagination.” I may have lacked imaginative play, but there was no shortage of imagining what driving across the Great Plains would be like. 

Of course, this trip wasn’t just a trip for the sake of a trip; I did have the kart race in Fontana and a vacation with my girlfriend in Rapid City. I also saw my mom in Nebraska. It’s odd; I hadn’t been down some of these roads in 11 years and yet, until I went back down them, they felt as if they were in the present until I saw them once more. 

It’s difficult to know of things changing. I do what I can to try and not be aware of change. Change is bad and so long as a certain gas station on the side of the road I liked isn’t known to be closed, it’ll always exist in my memories. Once I’m aware though, it’s very much like it never existed at all.

This trip is over and all the places I stopped at will be etched in my memory  maybe in a decade I’ll have a similar route and if I see change, it’ll make the memories of this trip like they didn’t happen at those places, but for now I can smile knowing that everything is still there. There is no change, and things are the way they’re supposed to be.

Diagnosis Revisited

This trip is almost coming to an end and I did make tremendous progress on my next book. I’m writing it in Chronological order and it is about my racing career and life story. During the past week I eclipsed a total word count of 50,000 and my most recent chapter was about the events of my diagnosis. 

I’ve told the story well over 1,000 times in presentations. I’ve spoken about the knowledge that something was different and the horrible information I received on the internet due to my doctor giving me no information at all. The emotions writing it was intense. 

For myself, presenting allows for all the pain I went through to be worth it. As I wrote the words about the hopelessness I experienced, it was difficult to maintain mental clarity because the after effects are still there. 

I’m realizing that my life has been in three segments: there was before diagnosis, after diagnosis, and accepting of diagnosis. The accepting aspect isn’t in regard to acknowledging it, but accepting it’s a part of me but it doesn’t have to define me. 

Stages two and three are not linear. There are times I will recede back into being in the simple “after diagnosis” stage and this is when I play the “what if” game and “only if I weren’t on the spectrum…”

I don’t know how others who are diagnosed later in life handle this. I also hope others don’t experience the level of trauma I experienced, but I know it’s okay to feel bad at times. Writing the chapter of the diagnosis made me realize this. 

Trauma stays with a person and when in the darkest of depths, those moments will stay with me. I cannot help this, but as I figured out that there have been three stages in my life I know that I’ll make it through back to acceptance.

I can’t wait for you to read this book. It’s still a bit of a ways away, but from the darkest of depths to the highest of highs, perseverance is a trait I never thought I’d use to describe myself, but I am here. The road wasn’t easy, but it most certainly was worth it. 

To make a mistake

There I was, driving down I-80 through Wyoming. I had punched in the hotel’s address well before the sun came up, and I was anxious to get to sleep. I still showed four hours from the hotel as the sun sat behind me in the west. 

I began to get confused, however. I had been down this road in 2011 going up to Casper and I strongly remembered going north a couple hours out of Park City, Utah and now I was surely someone deep within Wyoming. 

The worry passed. I tried not to think of it. Maybe my gps was taking a different way. Perhaps I didn’t recall the path.

Another hour passed and I finally looked at the destination. I was correct in that I was headed to a C town, but it wasn’t Casper I was headed to, it was Cheyenne!

The mistake occurred when I used points to get a free room. It did “hotels near” and for some reason 90 or so miles was considered near. 

I pride myself on not making these type of mistakes. In the grand scheme of things, it isn’t that major. My drive tomorrow is only 45 minutes longer, but there’s still a part of me that’s irate myself. 

Getting over errors can be difficult for us on the spectrum, even if the error is inconsequential like this. It isn’t a choice to dwell on it though as it’s simply there.

I’ll still get around to telling you of the Casper concept even though I stayed In Cheyenne. Even writing that left a sour taste in my mouth. I mean, how do I miss the mark that badly? Ugh! And the day started off so good with amazing scenery. Hopefully sleep will allow me to forget, move on, and put the misplaced towns starting with C behind me. 

Sadly, I have to drive through Casper tomorrow. 

A Nighttime Drive Up 93

As I continue my snaking road trip, a couple nights ago I drove from Vegas to Ely on US 93. I've always wanted to, since I learned about it, drive down US50 to Eureka, Nevada as that rod is dubbed, "the loneliest road in the US. This wasn't quite as remote, but wow, was it a ride!

I don't know why I'm attracted to remote places. I've been to some out of the way places, and making the drive drummed up that sense of adventure that I've missed. 

Traffic was sparse, and as the sun fully went down behind the mountains, the stars and milky way were a spectacle. 

I'm onward to Casper, Wyoming now and I'll talk about my Casper concept in details in the coming days.

Dreams and Writing

Thursday and Friday of last week saw a writing explosion for me as I’m working on my next book. I’ve been working on this book for 14 months but have had zero success in momentum. Meaning, before my road trip it was maybe a chapter a month which lends itself to nothing productive. 

When I began writing Finding Kansas in 2005, I noticed an uptick in dreams. Some of these dreams actually became concepts in the chapters! Once again, my dreams have become more realistic and it’s a bit daunting to go to sleep due to the amount of thought that they create. 

I wonder if there’s a connection? I’ve heard from others on the spectrum at presentations that, compared to others at presentations who aren’t on the spectrum, that our dreams can be more vivid and lifelike. I’ve got no clue if this is a thing, but in my life I can attest that, when my subconscious is working a lot, the dreams at night become more. 

I shall see if this continues when I complete the book. I’m nearing 50,000 words and I’m excited for this book to get released because it’ll have a strong cross market appeal.