Not a Stereotype

“I do overshare, I think it’s my way of trying to understand myself” – Carry Fisher via Fresh Air on NPR

I’m always surprised when people do not know that Carrie Fisher was bi-polar. I know this because she was a recognized advocate of mental health issue awareness and mental health advocacy played a big role in her writing. This was not some obscure fact relegated to the personal life section of Wikipedia; it was a huge part of who she was a person. I belief that the real reason this is hardly discussed is because we live in a society that is not equipped and does not want to discuss mental health issues. It is also my belief that this is grounded in ignorance, shame and fear.

It is really no surprise how ignorant we can be about neurological or mental conditions. A lot of popular knowledge is informed by the narratives portrayed in the media whether it is schizophrenia in a Beautiful Mind or autism in Rain Man or depression in The Virgin Suicides, the list is long. Unfortunately, many of these characterizations tend to focus on certain aspects of these conditions for dramatic effect while greatly diminishing many of the nuances that come with being or having any of these conditions. Take for example the character of Sheldon Cooper in the Big Bang Theory. The character seems to be overwhelmingly based on a caricature of someone with what used to be called Asperger’s Syndrome. His fixations, awkwardness and social limitations are played for laughs. I doubt that there are many, if any, that watch the show that think about how these traits can be isolating factors for a real life Sheldon or how that isolation can lead to feelings of loneliness and depression. It’s not funny folks, no matter how much Jim Parsons makes it seem so.

In the world we live in, portrayals in popular culture inform how people see others. For mental health issues they create binary stereotypes which usually reduce a condition to a few characteristics. Unfortunately this can lead to people asking me if I am good with numbers, if I can count cards, and all sorts of weird shit. I’m sure schizophrenics get asked if they see things and people with depression might be asked if they can’t get out of bed in the mornings. Stereotypes are abundant and we are usually judged based on them and that is terrifying. I find that having a condition can lead to a lot of thinking about how it can be an obstacle for getting or keeping a job, finding a significant other, maintaining friends or just being happy in general. This is why many, if not most, people with these conditions will go to great lengths to hide them. It is well documented that people on the spectrum can also suffer from anxiety and depression; this is one of the many reasons why, trying to hide who you are all the time is exhausting. People should really avoid these comparisons and try getting to know the person like they would anybody else. In some instances this may require some patience, like with me, but I promise it can be very rewarding and eye opening.

The commoditization of mental health terms also makes these misunderstandings worse. Think of all the terms that are thrown around with little or no regard for what they mean to the people who have these conditions. Really think about it, how many times have you heard or said “oh man that guy is a total psycho” “wow that dude is nuts, like he’s bi-polar or something” “sorry I had a bit of an autistic moment there” not to mention the hundreds of times where people throw around the words depression or anxiety, severely diminishing these serious conditions. I think that the colloquial use of these words underscores our basic misunderstanding of neurological conditions and can perpetuate myths and stigmas about the people suffering these conditions.

Finally, there is no way to speak about ignorance without talking about how most people get their information today: the internet. When we want to know something we ask Google. Many times people will read whatever comes first and take it at face value. Because I have a research background I tend to question sources a lot. I usually try to get my information from sites that have legitimate credentials. Whatever I read, I read critically, especially if it is an opinion piece rather than research or science based. Unfortunately this is not the case for most. Some people will read articles in blogs about how autism is caused by vaccines and decide not to vaccinate their children (vaccines don’t cause autism by the way). Others may read an article with rigid descriptions of autism and think anyone on the spectrum is some sort of savant or robotic person, when in reality every autistic person is unique from every other one. Inform yourself properly or, you know, just talk to someone on the spectrum and learn what it is like from the source.

After I was diagnosed, I told someone very close to me of the diagnosis. This person rejected the notion that I could be on the spectrum because, as she said, there was nothing wrong with me. She went off and read some stuff online. Later she couldn’t reconcile what she read in a few blogs with who I told her I was. Then she found a very patronizing video that broke down what a person with Asperger’s is like in about 6 minutes. It featured an anti-social child that spoke with great difficulty, had absolutely no social skills and had to be treated differently to get by. She captioned the video with, this is not you. No, it’s not me. It’s someone on another point in the spectrum. I tried to explain to no avail. Watching a 6 minute video on Asperger’s does not make you a qualified person to understand or judge who I am. It is in no way a substitute for the hours I’ve spent reading on the topic, the hours of therapy I’ve gone to and the way I’ve experienced my life. This person still does not recognize my diagnosis and I’ve had to accept that I won’t change her mind anytime soon though it is sad considering it is my own family. The contrast between being close to my family yet having to hide or act like I’m not on the spectrum can be isolating and thus devastating. Therein lays the crux of why it is important to speak about it. Hiding my neurological condition to make myself sociably acceptable also means that I have to act like someone who I am not, an act which itself tells your own mind there is something that is not right with you.

Which brings us full circle back to Carry Fisher, I tend to over share yet it was Fisher’s quote that helped me understand why I like to do it. When I share something it forces me to reflect on it, to reinterpret it and to find a way of vocalizing for the person with whom I’m talking. In having to go through that process I get to know myself better and how the real me fits in this world that is not necessarily made for people like me. The more I know who I am, the more comfortable I am just being myself and the more comfortable I am sharing who I am. The more I share, the more people see Autism in a different light and hopefully it informs how other people approach their own mental health. It’s a virtuous cycle of awareness and pride that can be a way out of a vicious cycle of ignorance, shame and fear.

Unwillingly Oblivious

After boring his dinner guests half to death with a lengthy interpolation that came out of nowhere, if I may add, on what it was like having Asperger’s, one of Manuel’s guests finally cut him off by saying “I wish I had a medical excuse for being an asshole.”

One night I was chatting with my ex in our apartment in Colombia. We found ourselves talking about home, not the physical place you live in but rather that place that your heart tells you – “you belong here.” I was complaining to her about feeling like I wasn’t fitting in the place where I grew up. I chalked up the feelings of not belonging to reverse culture shock. I had left Colombia, where I’d spent all my life, to study in Australia but had moved back for work. Culturally you could not choose two more different countries to live in. It made sense that the change would create discomfort. However, it was jarring that I would feel so alien and unwelcome in the place where I grew up and where my entire family lived. The conversation went on for a bit until my voice cracked and tears welled up in my eyes as pronounced “I don’t feel I have anyplace I can go back to. I don’t feel I have a place to call home.” I think it may have been the first time I voiced it with such conviction, but to be honest it is a feeling I have lived with most of my life.

Have you ever felt like this? Like you don’t have a place to call home or that you do not know who you are? I don’t know about you but I have lived with an ongoing identity crisis for what feels like forever. It’s not like I am perpetually thinking about who I am, where I am or where I am going. However, based on conversations I’ve had with friends it seems that I think about this a hell of a lot more than they do. I’m sure it annoys some people that at 35 I’m still asking these questions, but the constant questioning is me trying to make sense of the world. It’s exhausting and causes a lot of anxiety and occasionally depression. Of course, for a large part of my life the question has also been, why do I think about this so much?

The penny dropped when I was diagnosed on the autism spectrum in October 2015 at the age of 35. What does this mean? Let’s get some technical stuff out of the way. The Diagnostic and Statistical Manual of Mental Disorders (the book on from which the definitions of mental conditions comes from) calls the condition Autism Spectrum Disorder (ASD). In the past there was Autism and Asperger’s but doctors figured that autism is not binary it’s a spectrum. As I write I may jump around Asperger’s, Aspie and ASD, but ultimately I’m referring to the same thing. I’m not providing a definition because others with the condition may be reading this and I would hate to misrepresent or offend any of them with a bad explanation. (Tony Attwood’s The Complete Guide to Asperger’s Syndrome has a great lengthy break down of this)

Now, you may know someone on the spectrum and, if you do, you may want to compare them to me or me to them. I get it, it is an impulse we all have. But when you’ve met a person with Asperger’s you have met exactly one person with Asperger’s. ASD doesn’t define a person it just means they see things a bit differently. This to me means that the lens through which I see and interact with the world is different but it does not define my individuality as I am still a collection of my own thoughts and ideas. Because the lens is so unique for everyone on the spectrum I’d venture to say that more so than others, people on the spectrum are extremely unique.

Because I was born with ASD the sensation that I don’t belong has followed me for a while. I would say my entire life but that feels absolutist and would also presuppose I’ve been cognizant since I was a baby which is just a weird. I have found out that I am not alone in this (the feeling not the assertion that cognitive babies are weird). Remember that movie Baby Geniuses? Who the fuck green lit that?. Turns out, feeling that you don’t belong is very common among Aspies. So much so that one of the most popular Autism/Asperger message boards is called Wrong Planet. Over time the feeling has gotten better becoming less of a constant concern and more of an itch in the back of my mind.  It does occasionally bloom back into full-on existentialism when something in life makes me question how successfully I’m navigating the world, and thus my own humanity.

At this point you may be asking yourself what about the way I interact with world could make me feel like this (also thanks and congrats on making it this far, you truly are a patient person).  I don’t know if I can do it justice in a single post but I do want to give you a taste of what it is like. I have several ASD traits but perhaps a critical one is the difficulty in reading emotional reactions in faces, voices or the body. This translates into me not reacting appropriately in some situations, which impacts how people perceive and react to me, on which I base my own perception of how the world sees me. Basically my interaction with the world is like a game of telephone. Let me illustrate.

Have you ever given any thought to how many of the things you say or do are motivated by a smile, a frown, sad eyes, an upward inflection in the intonation of someone’s voice, a subtle body motion? Let me tell you, it is a lot! 93% of communication is nonverbal (crazy, I know).  Fortunately it’s not all of it I miss but a general rule is that the more subtle it is the more likely it is I miss it. Though it is really difficult for me to pick apart what I see and what I don’t. Think of the implications for dating or managing people at work. Think about it this way, you have no idea that you are missing anything. For all intents and purposes you think you’re acting just like everyone else. Sometimes something is off but you can’t put your finger on it, other times people look at you funny or may treat you differently. This happens a lot and you have no idea why, worst of all it has been happening all your life. (Are you anxious yet?!)

Okay, that got really dark really fast which is why I say I can’t explain my world in just one post. The truth of the matter is there are positives and negatives. For the most part there are I things I just I don’t notice. I am, as the title spells out, unwillingly oblivious. It is not an excuse for being an asshole, quite the contrary. I try to be extra nice and extra respectful to compensate for what I can’t see and I am mortified when something inevitably falls through the cracks. Because, as blind as I can be in the moment, in hindsight I can see a lot of my fuck ups and I have a wickedly good memory (thanks ASD!). I may have trouble connecting with the world but that doesn’t mean that I don’t desperately want to connect with it and, trust me. I try really hard to connect with it.

I hope to learn and connect more by writing this blog. You will learn a whole lot about me and you may learn a bit about ASD but mostly me because as I already mentioned we are all so different (think of how dangerous it would be to read Tucker Max and assume you now every bro based on that read, sounds awful, right?). I won’t always talk about ASD, sometimes I may want to talk about travel, other times about eating a sandwich because I ran out of shit to write about so that’s all you get. I hope it’ll be a fun ride for all involved. At minimum I’ll try to keep it interesting.