Note: After writing this blog post, I have since been to see a specialist and received a diagnosis. I will briefly explain at the end.
What I am about to tell you is something that, if you know me very well, you probably already suspect, and if you don’t know me very well is going to come as a big “ah-ha” moment to you.
All my life I have known there was something “wrong” with me. I knew my brain was wired very differently than most people’s brains. I’m not talking about the “I’m a unique little snowflake” kind of different. I’m not talking about the “everyone is a little weird and has their quirks” kind of different. I’m not different like an artist or a poet is different. This is something much deeper.
On a very deep level, I know that I experience the world and social interactions VERY differently than most people do. And guess what? The only way I have managed to survive this far: Fake it.
Yep, I’m faking it BIG time. And I’m not talking about faking it in the sense that most people cannot accept their success and have that nagging feeling that someday people are going to “catch onto them and discover them to be a fraud.” I’m talking about faking being a normal human being who laughs at appropriate times, who gives people sincere facial expressions, and says appropriate things at the right time.
In fact, all of my life, I have been studying how to play the part of a “functioning human being” like a method actor studies for a role. I joke with people about how most of the jobs I have worked in my life I approached like an acting role (i.e. Airman in the U.S. Air Force, best role I’ve played yet!). Except it wasn’t really a joke. I wanted to tell people that seriously, I was seriously playing a role like an actor does, but I didn’t think people would understand, so I delivered the line as a joke.
And look, I’m not talking about acting like people talk about “playing different roles in life” and “showing different sides of themselves in different situations. ” This isn’t acting like people who “wear a mask” and are “two faced.” I’m talking about coming to the realization that if I took the cliché advice of “just be yourself” then I was going to be a miserable, tortured human being that everyone hated because quite frankly, my natural instincts were all wrong and kinda scary to most people.
From a very early age, I knew that the way I interacted socially wasn’t quite right. So, I wrote tiny little programs and rules in my head that I could follow to cruise through life as “normal.” Fortunately, I was sheltered quite a bit during most of my younger years. Before I was twelve, if you asked me who my best friends were I would have told you the names of adults. Some of them had grandchildren my age.
I was mortified being around other kids my age. I thought it was because my early socialization was around homeschooled kids who were, no offense, kinda weird. And in the 80’s, a lot of the sheltered, super-fundamental Christian homeschooled kids were kinda weird compared to everyone else. And I knew what everyone else was like, because I had a few outside points of comparison: Kids I played soccer with at the Boys’ & Girls’ Club and my cousin, Ryan.
Ryan Giffen: I studied him closely. I tried so hard to emulate him. I only saw him a few times a year, so I didn’t have much time to really get it right. If you asked Ryan, he would tell you that the few times he did see me, all I wanted to do was play on his Nintendo. He hated that. My Nintendo obsession is something we can talk about later though.
So, Ryan was one of my first subjects of study. In a way, he was a hero of mine – but not in a way that I objectively admired him as a human being compared to all other human beings. But, more in a way that he was one of the first “normalish” kids my age I knew and was a good person to try and pick up a few tricks from. There would be other people along the way. Mostly, though, a lot of adults. I got along really well with adults.
When I was 14, I started going to a private high school and was finally forced to socialize with kids my own age. I had a very tough time. VERY tough. My parents, and teachers/mentors, like Todd Johnson, can attest to that. Mr. Johnson saw what a social buffoon I was first hand. Everyone blamed it on me being sheltered and only having adult friends. I accepted this explanation. Now I know better though. I never learned how to fit in. I learned how to pretend to fit in. Again, I cannot stress enough – this is not a story about typical teenage angst and how every teenager feels like they “don’t fit in” and they are on the out crowd. This wasn’t that. I didn’t fit into the entire human race. Ever. To this day. I never really got other people. No one ever really got me. I was not quite human.
Kind of like the movie, Not Quite Human with Alan Thicke. Remember that movie? About the android boy? I saw that show and thought – Yes! That kid is me. I am a robot too. I have been trying to write “pass for human” software in my brain ever since my earliest memories. So what is my deal?
When I started watching the NBC television show, Parenthood, a few years ago I was first exposed to the idea of Asperger’s Syndrome through the character of Max Braverman. I didn’t see a lot of myself in this kid, but I was fascinated with Asperger’s Syndrome. I read as much as I could about it. And then I started to have an ah-ha moment very similar to another character in Parenthood, Hank Rizzoli.
Hank was introduced in Season 4 of Parenthood, and his character starts to suspect that maybe he has Asperger’s Syndrome even though he has spent most of his life “passing” as pretty normal. So, he gets and assessment and he goes to see a doctor. The conclusion? Maybe. Maybe not.
Once I realized that Asperger’s Syndrome can show up on a spectrum – and some people are higher functioning than others, I started to have very similar suspicions. Everything I had been reading about Asperger’s over the past few years seemed to be describing me. Finally, after posting my last blog post, someone I’ve know for a very long time mentioned this to me and asked if I had ever been tested for Asperger’s.
Well, no, I have never seen someone to see if I have Asperger’s. I have been tested for Attention Deficit Hyperactive Disorder (ADHD) (this was actually the first suspicion my parent’s had when they knew they were raising a “not quite normal” kid). I have been diagnosed as possibly having temporarily had Obsessive-Compulsive Personality Disorder (OCPD) (possibly having temporarily had? Whatever that actually means). I have taken the Minnesota Multiphasic Personality Inventory (MMPI) three times and had nothing unusual come out of it.
A mental health professional did once say I had Self-Defeating Personality Disorder (SDPD), although considering that was based on a single 30-minute interview and the diagnosis was pre-determined before I went into the interview I have my doubts as to the legitimacy of this diagnosis. Also, SDPD actually has never been accepted by the wider psychological community as a legitimate mental health disorder and all references to it were removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 2013 after having briefly existed in the DSM as a discussion under review in the appendix. But all that is a story for another time.
So, I decided to take the Simon Baron-Cohen Autism-Spectrum Quotient test. Asperger’s Syndrom is a member of the lovely family of Autism Spectrum disorders. There are several places you can take this quiz. I took the quiz here at PsychCentral.
Let’s consider a few things: 80% of people diagnosed with Autism score a 32 and above. If you score 30-33 you are considered to possibly have Autism. If you score 34 and above you are considered to likely have Autism. I scored a 39. What does that mean? Well, since I haven’t seen a specialist, I can’t really know. Even if I did, I am pretty sure I would get the same answer Hank got from Dr. Pelikan:
“It’s impossible tell in one hour… My gut is that it’s a jump ball. The spectrum is very wide. I can’t tell you that you definitely have Asperger’s.”
So the question remains: Am I slightly on the Autism spectrum and have been living all my life with some kind of low-level high-functioning Asperger’s Syndrome? I don’t know. And it doesn’t really matter.
What matters is that this is pretty much how I have felt all my life:
Here is what I do know.
- All my life I have struggled with seeing things other than black & white and living in the grey world. I am obsessed with learning the rules and then following the rules. This tends to scare people who like to bend the rules (most people) but it has had the especially unique effect of making enemies for me of people who see my ‘do the right thing the right way’ obsession as a threat to their rule-bending/breaking ways of getting ahead in life.
- I struggle with being very mechanical, almost unfeeling, in my presentation of sensitive subjects, and criticisms to people, often grossly underestimating their emotional reactions. In the case of previously mentioned enemies, this can have a compounding effect when I say things matter of factually like, “You have done something wrong. I am duty bound to point this out to you and if you do not correct the mistake, I am required to report it to a superior.” Oh yeah and…
- I find it extremely difficult to ever go behind anyone’s back about anything even when that is entirely necessary for my own self-preservation. I am almost always shocked and surprised when someone goes behind my back about anything and doesn’t confront me about it first. After all, that would be violating the moral code. And my very sanity is based upon having and following a moral code.
- I absolutely love getting lost in doing boring, repetitive tasks, and I can literally do them for hours on end without stopping to take a break. The biggest problem with this is that I feel extremely guilty doing so because it is clearly underachieving relative to what I know is my intellectual potential.
- I am usually quite literal and earnest – so much so, that people don’t know what to make of it and take me as sarcastic. I have learned what sarcasm is, sort of, and I have written this into my programming and adopted this as my default humor style, but I don’t pull it off very well: My idea of sarcasm is “saying extreme opposite things” and because of my delivery, somehow people generally take me serious when I am being sarcastic. So, this is kind of a double whammy.
- I am very uncomfortable having more than one friend at a time, and I am very content with only having one friend. Almost all my life I have either had one very close friend whom I have spent all my time with (and probably burned out) or no friends at all and I pretty much lived like a hermit. During those times I might have a loose collection of acquaintances whom I never got very close to. Attempts at having or integrating into a “group of friends” have always failed disastrously for me.
- I have always struggled with picking up on unwritten social rules and norms. People have frequently had to spell out the obvious for me, and even then it takes me a while to wrap my head around it and code it into my programming. Most of these things, I still don’t understand, I just accept them as what I need to do to get by.
- My body language often misrepresents my feelings. Most of “tell-tale” body language the people pick up that I am displaying is very programmed and deliberate. This isn’t intended as a deception, but rather as my way of being honest. I have spent countless hours studying body language and what it means and learning to program it into my “simulation” of normal so that I don’t send the wrong signals. Still, this is something I struggle with deeply – it is a very nuanced and complex science – and people still completely misinterpret my body language, and therefore my intentions and my attitudes. This has had devastating effects for me in life.
- Pronouns drive me crazy. I honestly wish they didn’t exist. Especially when being used to refer to me. I understand the concept of pronouns and terms of endearment, but they often confuse me and cause me to have to break my flow of thought, do a quick adjustment/reversal to figure out what people mean, and then carry on. When someone calls me a name outside of one of the two agreed upon acceptable terms, “Z” or “Zachariah” it drives me absolutely crazy, even though I laugh it off and tell people it doesn’t matter. When someone calls me a term of endearment like, “hon” or “dear” (elderly and Southern people tend to do this most often) it is like nails on a chalk board and I want to run from the room screaming.
- I have difficult having levels of interest in anything: I am either not interested at all or completely obsessed. This made it very difficult for me to write papers as an undergraduate in college. Either I could barely get through researching and writing a paper, or I wrote long, obsessive papers that more than once criticized for being “PhD dissertation level” writing for what was supposed to be just a simple assignment. My English 102 paper, written in 2001, titled “Borged to Death,” was over 30 pages long (edited down from the original 60 so I could get a passing grade) and had a 5 page bibliography and was about the integration of humans with computers through direct brain interface devices, uploading our knowledge, memory, and eventually consciousness to “the cloud,” and networking our brains together with other people. The original assignment carried a max paper length of 8 pages. I received a C.
- I am oversensitive to certain physical stimuli. One little example: Have you ever held someone’s hand and gently caressed it with your fingers? If that happens to me, it drives me absolutely bonkers. I have mini-panic attacks in large crowds of people and have to practice intense mediation and “out of body” mind tricks to get around most of the time when I am in public. In fact, most forms of physical intimacy are very annoying to me. Which is especially difficult, because like a “normal” human being I long for physical intimacy as much as the next person. I suppose I just have a hard time fulfilling that longing in a way that doesn’t make my skin crawl.
- I have very strong, normal human emotions, but I don’t really know how to genuinely express them. When I am not putting effort into expressing my internal feelings, most people just assume something is wrong with me and I am sad. Most of my expressions of emotion are guesses at what people expect to see when you feel something. Again, this isn’t an attempt to be fake. This is just me having to put forced, conscious effort into what most people do unconsciously or effortlessly. I’ve gotten pretty good at it over the years, but I’m not always on the mark. Sometimes, I get exhausted from doing this and just keep everything in. This can really freak people out, but for me it is so much more comfortable and peaceful. The only emotion I don’t have much difficulty expressing and comes naturally is anger. Therefore…
- Expressing anger, to me, feels so, so, so good. Don’t get me wrong. I don’t like being angry. I don’t even easily get angry. I look at what makes so many other people angry and think in very logical, rational terms, “Why do people get angry about those things? How silly.” But, when I do get upset – and often at the weirdest things – the urge to express it physically with some kind of outburst is extremely satisfying, mainly because it is one of the only emotions I can express without putting in an extreme amount of effort. In fact, it takes an opposite extreme amount of effort to contain my anger. So, basically I have to put a lot of exhausting effort into displaying to the world that I am happy, excited, and even sad, and I have to put a lot of exhausting effort into not expressing those few times that I get angry in an inappropriate release. Basically, I’m exhausted all the time.
- Understanding how people feel and how they will react to something I say or do is a complex game of “accessing my data banks historical experiences” and drawing logical conclusions through complicated “points of reference.” None of this comes naturally or easy to me. This sometimes has the strange effect of making me much better at understanding someone’s feelings than normal people (because I took a very detached, logical, scientific approach to it), but more often than not causes me to never quite be on the point and therefore, make some pretty egregious blunders in my interactions.
- When I was a child, I got along with adults better than children my own age. Now that I’m an adult, I get along with children better than other adults. I’m actually not entirely sure what that is all about or what that has anything to do with. I am especially drawn to kids who have behavior problems who act out and children with special-needs or learning/developmental struggles. I don’t see “bad kids” – I see kids who are all just struggling against some kind of internal affliction or another. It is almost as if I am thinking in my mind, “Maybe there is something I can do to help and make them better at overcoming that internal struggle, they won’t have to go through as much crap as I had to go through as a kid.”
And that is just the tip of the iceberg, really. These are some aspects about me that I think will be key to understanding some of the behaviors and outcomes in my upcoming Public Shame series of blog posts. But, trust me, there is a lot more to it. A lot more “Asperger-y” (to coin a term, Hank uses a lot) stuff to how I think, how my brain functions, and how I interact with the world around me. If I shared everything, this blog post would be three times longer though, and I think it is long enough.
So what is “wrong” with me, huh? Why have I spent my entire life having to figure out how to spend every day struggling to fake being a normal human and still can’t quite get it right? I don’t know. And I don’t think it really matters all that much. It just is what it is. And it is a constant, minute by minute struggle. And it is exhausting. But it is what it is. And it sucks. It sucks for me. And it sucks for people who have to put up with me. It just sucks.
Since writing this blog post, I did eventually go to see a specialist and was told that my symptoms and history are consistent with someone with high functioning autism and was diagnosed as having Asperger’s.