A Corner I Never Saw Coming (Part 1)

You know the feeling of being somewhere and everybody else knows how everything works but you don't. That has been the definition of my perspective on life for more than 50 years. 

I assumed everyone else was going through the same troubles I was having.  They were just better at handling it. They could think better under better pressure. They always knew the right word, were quick with a crushing reply and conversation came naturally. 

I figured at some point I would grow out of the awkwardness and come into my own. While I waited for that magical moment I tried to hold myself together and fight back the waves of overwhelming depression. 

I don't know what made me try one of those online tests, boredom, curiousity, some faint wondering. The first time I took one it said I showed signs of being on the autism spectrum. I mentally filed it away and continued on my merry way thinking these tests were a crock.

The idea must have stewed there in the back of my mind slowly collecting evidence because my attention was drawn to a TED talk and I listened intently to the struggles of a woman who had just received a dignosis. To me, she didn't seem to be autistic. But the things she described were all painfully familiar to me. 

I was curious enough to start looking into this and found other autistic people who talked about their experiences. A journalist, a science vlog host who looked like Thor and others who looked ordinary like me. But when one of them said, "I feel like an ET on earth"  and another described receiving their diagnosis like receiving the owner's manual to their life, I noticed. Both were things I felt in my core. Except I hadn't found my manual. Yet. 

I took more tests from reputable sources like the autism societies in the US, UK, and Australia as well as medical groups in each of those countries. And the same results kept piling up. Every one, without fail, said I showed signs of being on the autism spectrum. 

I did more research and watched vlogs and informational videos. Before long I had a growing list of instances in my life that parallelled the experiences I learned about. 

I spent 2-3 years researching and gathering evidence. One YouTube host joked that just the thorougness researching was a good enough for a diagnosis! 

In the autism community it is usually enough to self identify to be accepted but that wasn't good enough for me. I wanted to be certain and official. 

Ohio has some of the best laws on the books protecting autism diagnoses and treatments but it still took me a year on a waiting list to get an appointment. 

Then the test began....

 This time of year it seems that many people are in love with the holidays. 

I have never been a huge fan. The only part I liked were the school vacation and hopefully getting whatever thing I was into that year. More often I didn't than did and I knew it was because we were cash-strapped most of my young teen life. 

Instead, I find the holidays filled with confusion and anxiety and this year was basically that with travel mixed in. 

A few years ago I decided that I could not keep up with all the demands and maintain my sanity. (What little left there is.) I'm sure that I have disappointed a few family and friends by not sending out cards every year. Sorry to those of you who wondered where I had disappeared to or those who thought I didn't like you any more. 

The simple change means I enjoy the holiday a little more. I've also started doing my shopping all year. For one, it spreads the expense and for another, I don't have to rush around last minute hunting through crowded stores. 

The only issue becomes changing preferences. Something someone liked in February isn't wanted any more or no longer age appropriate by the time December comes back around.

In Ohio the stores are not nearly as busy as they are back in California but being able to avoid the crowds almost completely is well worth it. 

Recently, during a trip to see family, I was reminded about how busy those stores can be. Minutes after the store opened there were crowds milling around. I could start to feel the crush of people  Eventually, I just needed to get out. 

It took a while for me to rebalance and I felt more than a little embarrassed. During those times I also find it hard to speak or put words together in any but the most basic sentences 

The trip also drove home the awareness that I could not live in a busy urban location any more. The crush and mass of people is just too much for me. 

Guess I'm a country mouse now.

The Dark Passenger

 In the series Dexter, the main character had a name for the dark impulses that drove him to kill. (Incidentally, Michael C. Hall and I share the same birthdate. He's probably only hours older than me.)

Sometimes when the universe creates coincidences like that it is important to listen. And what, you may ask, could I possibly learn from a TV serial killer antihero? 

Dexter is constantly haunted by his "dark passenger" and goes to great lengths to hide its influence to appear normal to the world. This is the same mission of so many autistic people. I watched Dexter before I had any idea about my own secret and I found the character so interesting for the routines and rituals he performed to maintain control. But it was the characterization of the dark passenger that fascinated me most. 

Seeing the world from his perspective was familiar to me. He worked hard to appear "normal" but often he seemed niave or just a little strange. But he was very much in control of his world when alone.

To me, autism often feels like there is some switch or inner glitch that just needs to be exorcised to be "normal". But it can never be removed because it is about a brain with fundamentally different wiring. 

In my case, stress makes me loose the ability to speak. I depend on routine to maintain mental balance. Unexpected changes take time to switch gears and can manifest as confusion or disorientation. I have encyclopedic knowledge of certain television shows, paranormal subjects and a few "-ologies". I have an insatiable fascination with charts and maps, astronomy, geology, giant robots and spaceships but the humans who use them are usually an afterthought. I am easily embarrassed and feel shame at the drop of a hat. 

I find it hard to maintain friendships because the ettiquette involved escapes my comprehension. I can be easily annoyed by repetitive sounds like telephones and sometimes have a short fuse when an obvious solution is dismissed. 

I also regularly can recall and relive times when I made a mistake or hurt somebody's feelings or just acted weird because I didn't know that I was not acting socially acceptable. 

To be honest, most social conventions escape me. I follow them for because it is expected, but they seem unnecessary and sometimes counter productive. It is gratifying when I get them right. Most of the time, though, I remain quiet and observant and I never go first unless I am confident of what I am doing. 

A New Paradigm

I had assumed PTSD was what was holding me back from accomplishing what I wanted. Most of the symptoms are also found in other conditions. Autism, ADHD, and others can have a similar effect. Interestingly, depression seems to be caused by everything. 

Years earlier, while seeking out possible causes for my mood, I found a site that had various tests to take online with results tallied in realtime. 

In my desperation I took a few, including the autism exam. I don't remember the results but I remember it reporting I had some traits. 

I have had personal contact with autistic individuals and I couldn't see any commonality. Occasionally, as a kid I wondered about what we used to call Aspergers Syndrome. Small personality traits sometimes showed parallels but I attributed it to converging i symptoms.  

I still labored under the idea that autism was something others had. Until I watched a TED talk given by Jessica McCabe. What she described hit me like a shockwave. I could relate to almost everything she described feeling. 

As I expanded my research one thing stood out to me. So many people with Autism described feeling like an ALIEN on earth. I felt like I was an observer and everything was foreign to me. I had always felt this way. I would write stories about characters who came from other planets and even drew a comic strip with that same premise.

When I was old enough to drive I would search for quiet rural locations to sit and secretly hope the mothership would come back for me. I went through various scenarios5 how I could have been switched at birth or even harboring an alien entity. 

Because this world made no sense and I couldn't see how I was a part of it.

The revelation I might be autistic lit a desire to learn for certain. I went online and found as many aitism screening tests as I could. England and Australia seem the most aware of their autistic citizens and had sections on their healthcare websites desicated to education and testing. The U.S. didn't have as many resources but there were national advocacy groups. 

In all I must have taken a dozen tests, variations, and sometimes multiple times. All came back with the same conclusion....

(Yes. One of my own screen cap results.)

On the one hand, it was a bit of a shock. Some part of me wondered, based on what I had seen on television. But, that was TV. Real life is much different....

Right?

Acceptance or Rejection

Faced with the evidence of possible Autism. I decided to take a while to research before I came to any conclusions. 

As usual, my first stop was the library. It helped that I was working at one at the time. I found and checked out books by Temple Grandin, one of the most famous autistic persons with a successful career. 

Her books were enlightening. As I mentioned in a earlier post I had misconceptions about the abilities of people with autism. I knew of her from a book layout I had done for a publishing company years earlier. 

What I didn't realize was how little her autism really affected the way she lived her life. If anything, it was the people around her and their preconceptions that made her life difficult. But she navigated her way around them and proved her differences and focus made her just as valuable as any member of their team.

Her inventions made the beef industry more humane and ensured that the animals were not harmed or unnecessarily stressed. And her insights learned from her autism are what enabled her to see a better way.

This was the beginning of a journey of revelation and new understanding. I began to see stories of people who, had they not told anyone, would never have been suspected of being autistic. 

I watched an episode of a favorite science channel on YouTube where the host simply sat and described what it was like to be autistic and have a career on camera. 

Another video by a filmmaker explained the challenges of meeting new people when all he wanted to do was run. 

There were also videos by people who learned late in life that they were autistic and never knew. Many described how difficult their lives were before and what adjustments made a difference. For them, the diagnosis explained years of confusion and alienation.

There is a surprising. Buy Occasionally, a YouTuber would make a, "You Know You're Autistic When...." or a "Top 20 Traits"  video and I could sit and tick off the ways I matched what they described. What surprised me most were the people who, if they had never said anything, would not seem autistic at all.

That is one of the challenges of "low needs" autism. It presents outwardly like anybody but the internal world is so much more chaotic. Many people can mask the symptoms enough to function in the regular world but it takes a heavy toll over time. Especially for those who don't realize they are masking.

At first, I didn't think I was masking at all, and that made me think I couldn't possibly be autistic. But as I learned more and saw the ways I mask, I began to understand better.

The revelation hit me one day after I had spent 3 years generally researching and I finally accepted the thought. For a few weeks I went around discovering all the little internal and external tells. I began to look back at my life and childhood and could point out specific events and times when I should have been clear.

Then, with the realization came the grief for living for so long not knowing and being lost and confused by the rest of the world. I was angry for the lost time and profoundly sad. My akward interactons and strange behaviors suddenly came into glaring focus.

It is a common miscomception that autistic people lack emotion or compassion. That is not true. On more that one occasion I have been accused, by family no less, of being too sensitive. I once lost a favorite stuffed animal at a swapmeet. It made me sad to think about it sometimes and that emotion was used as an example of my "weakness".

My compassion keeps me from getting too involved in issues because I become to emotionally affected. I once considered Native American studies for a minor but found myself more and more depressed by the history of the native tribes after European contact. By the time I finished my first class I was distraught and extremely angry.

Sometimes songs or movies get me. I once cried because a baby giant monster was reunited with it's even larger parents. I was blubbering so much nobody could understand what was wrong with me.

        The offending scene from Gappa: the Triphibian Monster. (Sniff sniff).

With the sadness there was also a profound sense of peace. I had finally found my answer. Before, my life was like assembling a puzzle with vanishingly small pieces without any idea what the final picture was supposed to look like. 

I had finally found the beat up and scratched box with the completed picture. Now it was up to me to put it all together.