Autism – Monkeywrench Your Life!

Unmasking

Unmasking doesn’t make the world easier to navigate; it just changes the nature of the autism tax.

Masking: The conscious or unconscious suppression of natural autistic traits and responses, combined with the deliberate imitation of neurotypical behaviors (e.g., faking eye contact, scripting conversations, suppressing sensory discomfort) to pass as neurotypical or avoid negative consequences.

I never force eye contact; I fake it. I look at the part of your face where your eyes are, keeping my eyes unfocused. I cannot tell you what color eyes my wife has, because I have never looked at them with my eyes focused. But to the world, the performance looks real.

In short: Performing normalcy.

Unmasking: The process of stripping away these learned, defensive behaviors to operate according to one’s actual neurological design.

The mission: Go to Camping World and purchase a portable waste tote.

The script: This should be simple. The script for buying something in a store is easy:
– Enter store
– Locate item
– Bring item to register
– Greet cashier
– Pay for item
– Thank cashier
– Exit store

The Breakdown: I drove to the Camping World store and walked through the front door. There was woman at the front reception desk, but she ignored me. No problem; I could see the retail display area over to the right, so I walked that way. I walked around for a couple of minutes and saw an aisle with sewer hoses and attachments and all that stuff that any RVer is familiar with. I walked down that aisle and sure enough, right in the middle of the aisle, there were boxes of totes stacked up.

They had two different models, with two of each stacked on the floor. On the top of each stack of two was one of those plastic sign holders with a sign identifying the model, the price, the discount, and the final price.

Great. So what’s the problem? Well, now what? These things are huge. And they’re heavy. And there’s that sign sitting on top of the boxes. So what, exactly, am I supposed to do now? If this was Home Depot, I’d go get one of those flat-bottom push carts, load the box onto the cart, and push it to the checkout. But this isn’t a home goods warehouse. This is Camping World. I don’t have a script for this.

If an employee had walked up to me at that moment and asked if they could help, I could have said “I’d like to get one of these,” and point to the one I wanted. Then the script in my head forks, and the employee either says “Okay, let me help you get that,” or they say “Sure. Come with me and we’ll get you checked out and I’ll get one from the back.”

But no employee materialized. So now what? Am I supposed to move the sign off the top of the stack, take the top one down and put it on the floor, and push it to the register? Am I going to look stupid pushing that across the floor? Is someone going to come up to me and say “Sir, what are you doing?” And where would I push it to? There’s a cashier counter at the front of the store, but there’s nobody there. There’s a Parts counter at the back of the store, and that’s staffed, but I’m not ordering parts for my RV. I have no script for this situation.

The Number One Rule For Existing In The World is to look “normal.” I can’t stand in the aisle of the store looking panicked. Sure, my chest is tight, my heart-rate is up, every muscle in my body is tensed, but I can’t let it show. So I walk casually up and down the aisles, pretending to look at items on the shelves. I’m still hoping an employee will walk up to me and ask if they can help. If that happens, I’ll pretend I didn’t see the totes in the aisle, and I’ll just tell them what I want to purchase. Meanwhile, my physical symptoms are increasing, and I know I’m approaching the wall.

For most of my life I forced myself to push through the wall and “get it done.” That’s what was expected. My entire childhood was people telling me that I needed to just try harder. I’ve had so many awkward, uncomfortable interactions where I didn’t have a script and therefore didn’t know what to say, and I half mumbled something rather dumb and had to deal with a confused clerk.

Not today. Today I decided to leave. I walked out the front door, got in my truck, and drove home.

The Post-Mortem: Nowadays, I understand why my brain works the way it does. I don’t feel the guilt and frustration I felt for most of my life. I no longer ask “Why can’t I just be normal?” I can’t because I’m not. I’m an Aspie. I’m autistic.

But there’s a cost to being different The world isn’t made for my neurotype. That cost can be internal or external. I can carry it inside myself. That’s masking. Or I can carry it outside myself. I can let myself be more myself inside my head, but present to the world as “more autistic.” That’s unmasking.

Carrying the cost externally means leaving the store empty-handed and letting the system halt when it hits a wall. But a lifetime of conditioning doesn’t just evaporate. I left feeling that I had failed. Unmasking doesn’t make the world easier to navigate; it just changes the nature of the autism tax. I can be more “me” to myself, but that means being more autistic to you.

P.S. I did eventually purchase the needed tote. When I got home I ordered it online, and two days later I drove back to the same Camping World and executed the simple “Hi, I’m picking up an online order” script.

Being Autistic In The Philippines

On so many levels, it was an insane choice to move to the Philippines as an autistic person. I did it anyway.

There are some common challenges shared by many autistic people. Being a rather common person, I too struggle with these challenges.

Of course, the Philippines can be a sensory assault.

The Philippines is a tropical country so it is hot and humid. If I am outside and moving around or working, I constantly feel wet and sticky. I deeply dislike that feeling.

The Philippines is crowded. It’s a small country with a lot of people. People bump into me and brush past me on the sidewalk and in stores. I can struggle with people I know touching me, and having complete strangers touch me can be nearly overwhelming.

The Philippines is loud. Filipinos like it that way. If you go into a mall in America, there is quiet background music playing. In the mall here, that music is loud. If Filipinos have a party — and there is always a party! — they haul out enormous speaker towers to play music and sing karaoke, and there is only one acceptable volume setting; MAX! I know that people enjoy this loud music, but I don’t understand how. To me, it is physically painful.

The Philippines is chaotic. Driving in the Philippines is nothing like driving in the West. In the West, I treated driving as an exercise in rule following. Here, nobody follows the rules. It took a long time traveling as a passenger for me to develop a paradigm for driving that would suit me here: I treat driving as an advanced exercise in pattern matching. By carefully watching everyone around me on the road, I can recognize patterns and predict amazingly well what others are going to do. It is exhausting, though.

But the biggest challenge for me is communication. The Philippines, and much of Asia, is a high-context culture. According to Wikipedia:

“A high-context culture places emphasis on nonverbal cues, social roles, and shared experiences in communication, while a low-context culture prioritizes explicit verbal communication and direct statements. In high-context cultures, messages are often implicit and rely on understanding the background, relationships, and unspoken rules within a specific group.”

Now, in this comparison the United States, and indeed much of the West, is a low-context culture. But when comparing autistic people to neurotypical people, even in the West, neurotypicals are high-context and autistics are low-context. Autistics tend to process language literally, and struggle with figurative language and social context.

What all this means to me as an autistic living in the Philippines and trying to communicate with Filipinos, is that I am far to one extreme in communication style while Filipinos are far to the other extreme.

The only way I know to communicate is to say what I mean, as clearly as I can. I don’t mean more than the words I say, and I don’t mean less. But people in a high-context society do not speak this way. In fact, it is often considered rude to speak this way. You never say anything that might embarrass somebody publicly, for example.

So often, I end up feeling like the proverbial bull in a china shop, having made a simple statement and then feeling like I’ve insulted everybody involved. And, conversely, I often end a conversation and am left feeling that while I understood all the words that have been said to me, I somehow have missed the actual meaning of what they are trying to say.

I don’t know that there is a solution to this. I have learned a lot over my six decades of life in a neurotypical world, but I am autistic, not neurotypical. I do not think like a neurotypical and I do not communicate like a neurotypical, let alone a neurotypical from a high-context society.

In the end, Inday ends up bearing the burden of interpreting much of what is going on for me. She often saves me by coaching me on what things I can and can’t say. This is an unfair burden on her, and I wish she didn’t have to fill this role.

Eden will often defuse my frustration by smiling and saying “Sweetie, it’s the Philippines!” Indeed, it is the Philippines. I chose to come live here. There is so much to love about being here. Yes, it was a rather crazy choice for an autistic to make, but I made it. It keeps life interesting! Much worse than living what is at times a difficult life, would be living a boring life.

A Short One

I don’t know what to title this blog post. But it is a short one, so I’ll just go with that.

There are a number of common comorbidities to autism, and I am in the process of being evaluated for some of these. It will be a number of months before I get an actual diagnosis, because that’s just how backed up the system is, but I’ve taken the screening tests and I know my scores. That being so, I have a good idea what the results are going to be.

I scored very low on the ADHD test, I scored right on the line between mild and moderate on the OCD screening test, and I scored off the charts for alexithymia.

The only one of these that surprised me at all was the OCD test, but on reflection I’d say that’s just me being unaware. Apparently, not everybody has the unending internal dialogue that I thought was normal. Fortunately, my level of OCD doesn’t really interfere in my daily life. At least, I don’t think it does.

As for alexithymia, when I first read the definition, I knew that fit me to the nth degree. Basically, alexithymia is a difficulty in discerning emotions, either my own or other people’s. I’ve seen it described as emotional illiteracy. I remember once telling someone that if they gave me three days, I could figure out what I was feeling. I’m sure that sounded crazy at the time.

I experience emotions as physical things. My stomach hurts. My chest is tight. I can’t quite take a full breath. Usually, all I know is that I’m feeling negative emotions or I’m feeling positive emotions.

When Anju and I were out for dinner last week* I was explaining these test results and what alexithymia is, and her response was “Oh yeah Dad!’ So it seems this is much more apparent than I ever thought it was. I hope it didn’t make me a bad dad.

As for discerning other people’s emotions, I have these internal dialogs when I’m interacting with other people that might go “oh, his voice is going up and he’s making bigger and bigger gestures. I think he’s angry.” Often I’ve no idea why, so I just assume I did or said something in a way to make the person angry, usually unintentionally.

Okay, that’s it. Short and sweet!

* This was written last month soon after I got back to Tennessee after my trip to New England

What? I’m Different?!

Yeah, this is not news. I’ve always known I’m different. Sometimes to the point of feeling like an alien from another planet. And I suspect many of you have thought there’s something different, or odd, or whatever, about me.

He’s shy. Awkward. Quiet. Clumsy. He’s a loner. Doesn’t like people. He’s weird!

I’ve heard these things said about me. I’ve thought these things about myself. And more. So much more.

Here’s an interesting tidbit. Of all the people in my life; two parents, two brothers, two ex-wives, several girlfriends, a daughter, a passel of in-laws and nieces and nephews, friends, co-workers, etc., etc. Out of all those people, I can’t tell you what color eyes any one of you has. I never look at people’s eyes. I pretend to look at people’s eyes. I look at that general area of your face, and I sort of un-focus my eyes so I don’t have to actually look at your eyes.

I’m 64 years old now (brief aside: holy crap! How did that happen so fast?), so I’ve had a pretty long time to try to figure myself out. I’ve thought I’m shy, I’m an introvert. But I knew it was more than that. Then I researched Social Anxiety, but that still didn’t fit right.

About 5 years ago my doctor asked me if I’d ever been assessed for Autism Spectrum Disorder. Actually, whether he said Autism Spectrum Disorder, or Autism, or ASD, is completely lost to memory. His question rather took me by surprise. I told him I hadn’t, and he said I might want to do so. I told him I didn’t see the point. Even if I were autistic, what would be the point of getting tested? I’m not in school and didn’t need any kind of special accommodation. What difference would having a diagnosis make? And, of course, it’s an expense I didn’t need.

But that did set me off on a course of research and self-education. I read a lot about Autism. Then I discovered that various screening tests are available on-line, and of course I took all of them. Then I went to the source, and read the DSM-5 criteria for ASD. And the more I read and thought, the more it all fit. It just made sense. It explained so much of my life experience.

But thinking I’m autistic and knowing I’m autistic aren’t the same thing. I know there are many people who have never been officially diagnosed and feel confident saying they are autistic, and considering the difficulty and expense of getting an assessment, especially as an adult, I would never question them. But for myself, I came to think that I needed that official affirmation, that what I had come to believe about myself is indeed the truth. So I limbered up my credit card and paid for an assessment with a psychologist who specializes in adult Autism. And to my great relief, but not surprise, he confirmed that I am Autistic.

Up to this point I’ve only told a few people. And I’ve gotten a surprising range of reactions. I remember one person replying, “Oh no, you’re not autistic!”

On the other hand, when I was first coming to this conclusion about myself I mentioned it to Aoife, and she said “Oh, I’ve always assumed you were autistic and just didn’t like to talk about it.”

Interestingly, Aoife is the person with whom I have masked the least. She once asked “You don’t mask with me, do you?” And all I could say was that I don’t think so, but masking is such a default state that I couldn’t really say.

Masking is all the myriad things Autistic people do to try to fit in to the world. Things like pretending to make eye contact, and very deliberately trying to have the appropriate expression on my face to indicate that I am listening and interested in what you are saying, rather than my default blank expression. Not rocking back and forth while we talk. And a million other things.

When I was first thinking about writing this blog post, I logged onto a Facebook group for older Autistic adults which I belong to, and asked whether I should. Not one person said yes. In fact, they made very good arguments for not doing so. And I agreed with many of those arguments. I even said I didn’t think I was going to write the blog post after all.

And yet here I am, writing it. I do seem to like to go all in! I’ve decided that I want to unmask as much as possible, and see what life is like when I’m more my genuine self. I probably can’t totally unmask. Human society demands certain conventions in the way we interact. And maybe, just maybe, if you know I’m autistic, you won’t think I’m dumb when I don’t understand your jokes, or when I have to ask what “level up” means, because I process language very literally.

So here it is. I’m all out there. I’m Autistic. I know it, and now you know it. Nothing has changed; I’m still the same person. Yet everything has changed, because now I know. Whatever you do, please don’t feel sorry for me. This is great news! Learning about this is one of the best things that has ever happened to me.

I am well aware that I haven’t tried to explain what Autism is. What I’ve written here is about me figuring it out and a bit of what that feels like. I spent several years learning about it, but I certainly don’t expect you to do that! But if you are willing to devote 15 minutes and 31 seconds of your life, here’s a YouTube video that gives a pretty good overview.