Suddenly All Chinese.

 This new autistic paradign I am living under has  revealed a few parts of my personality I always just took for granted.

For example, most people, when in line in a restaurant or drive through, will make their order and, when faced with an unavailable item, change their order on the fly. 

Not me. I have a hard time with instant decisions most of the time. Unless I have a preplanned alternate I will struggle. When I pick up food for the family, I ask for alternate menu items just in case because I don't have the processing power to instantly decide. 

Let me take you on the journey I can sometimes face in a drive through. 

When I first pull up to the line, I will review what orders I am picking up for others. I have a preplanned personal menu of go-to items for each restaurant so I don't have to remember what I want, I already know. 

It is just easier. 

When the attendant asks for my order I recite everything in my list with pauses so as not to overwhelm them. Occasionally, a menu item won't be available and then I have to make changes on the fly. When I have an alternates list I am set but occasionally I am caught off guard. 

For example I recently made an order where I asked for unsweet iced tea and was told they didn't have any. I didn't have the option of saying forget it because it was part of a combo and I had not asked what an alternate item could be. 

I try to scan the menu board but to my dismay the entire menu has instantly become Chinese and food images make no sense. The person I was ordering for always gets unsweet iced tea and has been avoiding sugary drinks. I desperately try to slow down my darting eyes and find the drink menu but it's still in Chinese. I can feel urgency as I remember there is a person waiting for me to make a choice and people behind me waiting for their turn. Unable to process information I eventually say, " Okay, coke then." To which they sometimes respond, "Is Pepsi okay?" Because I didn't remember this eatablishment only carries Pepsi products.

"Yes, thanks." I say as calmly as possible. But my inner dialog is shouting, "Yes! Fine! I don't care. I use coke as a catch-all word for standard cola without anything fancy to it! Just let me out of this torturous situation! I'm getting the wrong drink and I am worried that person will be upset and have to go thirsty! All because you didn't have UNSWEET ICED TEA! "

I smile politely as they hand me the drink and wait patiently for them to hand me the rest of the order and my debit card. Inside, I am feeling worried for the menu item substitution and searching my memory to figure out if there was a better way to do this (which there usually isn't).

My anxiety over the whole thing doesn't dissipate until we are eating and there is nothing more to be done. I now keep lists of what we ordered previously, on my phone. I can refer back to it as needed. 

Listing helps with a small sense of control. The menu turning Chinese for me never truly stops.  Restaurants change menu designs often and occasonally in the middle of an order. Sometimes when the attendant takes a while, or I can see the menu from a couple cars back, I will study it to boost familiarity. But even that doesn't stop the sudden onset of illiteracy. 

Before I knew I was autistic, I struggled with transactions like you just read. I consoled myself with rhe idea that others around must be experiencing the same problems. How come they were better at it than me? This is not to say that it is better, because it's not. 

In It Now...

 I have heard from a few different sources about the first 6 months after an autism diagnosis being the toughest. Adjusting to this new perspective and even giving myself permission to be who I am is sometimes disorienting. 

I spent my entire life hiding who I am and how I see the world because it didn't conform to the rest of society. I know I am a bit of a "lefthanded monkeywrench" but I suppressed the comments and observations to fit in and not alienate others. I also hid my love of certain subjects from everyone but family and very close friends. 

I felt people wouldn't understand or worse, openly ridicule. My fears also kept me from pursuing a route that would help me find a measure of peace. I can remember at least 3 to 4 major depressive episodes in my life all came about 5 to 7 years apart and one of the last ones was bad enough to have me seriously considering how to exit this life. Part of my belief system says that if you check out early, you have to eventually return to make up for what you did to harm others, and what you didn't accomplish. The idea of having to come back was more than enough reason to tough it out. But that didn't prevent me from having a exit plan. 

When I finally accepted that autism might be the main reason for my depression, I didn't want to believe it. But when I confirmed it with the psychological tests everything changed. 

Have you ever spent a long time in a noisy environment? Many people eventually learn how to tune it out but when the noise stops suddenly its absence is distracting. That's a little like what learning I am truly autistic is. The problems come after the realization. 

I have spent half a century suppressing and observing. I believed that the mask I wore was what everybody experienced. I even marveled at people who seemed to respond without having to consult the inner filter. Then I learned that most people don't have on because they don't need it. They have an intuitive knowledge of the rules. The same ones I took decades to learn and craft into a convincing façade of the average person.

What bothers me now is the realization that I can't go back to that person I was. My existence has outgrown the restrictions and now I can't get back in the bottle. But along with that come a distression realization of limits I felt I could ignore. My skills seem to have regressed and I am not able to mask like I could.

The Corner I Never Saw Coming (Part 3)

 The testing process was interesting and more detailed than I ever realized it might be. Looking back at the segments, I could kind of understand what each was supposed to check. Many had to do with memory but my favorite was using shaped tiles to recreate outlines shown to me. There was only one at the very end that was a bit challenging and took me maybe twice as long as the others. 

The results came two weeks later. I have to say I wasn't surprised to be diagnosed autistic. Everything I had been experiencing and discovering about my life pointed that way. I have lived 54 years without knowing why everything was so hard. 

I'm not whining. I genuinely wondered how other people managed to get past some of the things I saw as almost debilitating. I thought they were experiencing the world the same way I was. They just seemed somehow immune. 

I had no idea I was playing a completely different game. Or maybe the same game but with the wrong rulebook. There were so many embarrassing behaviors I never realized, or in some cases, I didn't know I was behaving strangely. Then I windered why people rejected me. 

I was just beginning to think I had finally figured out I was supposed to be depressed for the rest of my life. A kind of acceptance of fate. 

When I learned I hadautism I didn't know what to feel. I immediately went through a sort of life analysis. All the things I did that I didn't know why suddenly made sense. I was recontextualizing the entire 54 years under this new paradigm.  Interactions, responses to stimuli or events, times I felt awkward in a conversation. All the times I worked to finish something even past the point of exhaustion. Or other times when I couldn't get started on something because I couldn't see the way forward. 

I never really struggled much with school subjects, but I did with the relationships. I was a Gifted and Talented Education (GATE) student and there was a certain amount of pressure to be the best among peers. I have learned recently that the GATE program was a recruiting ground for military special programs. Supposedly the remote viewing programs were never shut down. They just changed. But that's for another post.

After my diagnosis I really didn't feel different. I just had a new perspective on my existence. And somehow that was both liberating and terrifying.

 feel. 

The Corner I Never Saw Coming (Part 2)

 I spent a year on a waiting list for a test and I that time, I began to adjust to this new perspective. 

Right off the bat, I feel compelled to apologize to all those people whose feelings I hurt. In many cases, I reexamined what I had said, or didn't say, and realized that I must have sounded a little insensitive or oblivious. Times when my jokes fell flat or when someone wanted me to do something I knew was beyond my capacity and I turned them down. Or worse, said yes and regreted it later. Those are the times when I could see the flickers of disappointment or a lack of understanding.

I didn't understand, myself.

Many times, I went along but felt miserable. Social events drained my batteries. Not enough to disable me but I usually felt tired for a few days leading up to and after. It took so much to mentally prepare. Far more than I ever realized. 

So now I am in a period of grief as I process the half century of missed help and support. I know there is nothing that could have been done. I was a good kid in school. I did what they asked of me and could ace tests easily with minimal study. But there were the many nights I locked myself in my (shared) room and listened to music. To anyone else, it would appear to be teen angst. 

I just knew there was something wrong with me and it had to be because I was what used to be called a nerd. Beyond help. 

I remember seeing a classmate sitting in a hallway getting assistance with a test once. It was someone who I never would have guessed was dyslexic and I remember a slight twinge of jealousy that he had someone to help him. 

But I was supposed to be normal. Just gifted. Psychology was never something the schools were concerned with. They wanted to fill our brains as fast as we could consume information. 

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"The army doesn't care about your head. Just get the enemy in the crosshairs and blast away!" 

          -- Maj. Frank Burns, MASH, "Deal Me Out." 

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We made the school scores look better in state reports. Few, if any of the teachers felt the need to be concerned for their students mental well being. Unless a student broke down and started acting out. 

I knew a few who had the system figured out and decided not to play. They put their efforts into other, more self destructive, pursuits.

To me the only way was through. Finish school, finish college, get a good job. I didn't have time for the side trips into substance abuse. Besides, I don't like the taste of alcohol. In fact I am very taste aware. I don't like strong flavors or condiments that don't stay put.

Statistics say 17% of all teens and adults have substance abuse issues. In the autistic population the number is between 1%-36%. That is so ridiculously wide it is meaningless. It says to me that there is a wide variety in the testing methods and conditions. I imagine for many autistic people alcohol or drugs help with tolerating social situations. For myself, I can't imagine that the loss of control would feel good. And, again, there is the taste issue. 

In my entire life I can count on my fingers how many drinks I have had. Even what they were. In order. 

For example, a sip of beer as a small child, a sip of red wine on a camping trip, a "Black Mambo" beer on my 21st birthday, (A memory I treasure because a close friend bought me my first true drink.) a rum and cream soda at a friend's party. (The only drink I liked because the alcohol taste was masked.) Two Zimas, several years apart, a few wedding champaigns, and a couple of wine coolers. 

Big drinker, I most definitely am NOT.

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....