Daily Cosmonaut #4: Good Trouble
We’ve recently launched a Kickstarter project for my book Good Trouble: Building a Successful Life & Business with Asperger’s. I wanted to explain more about why I wrote this book.
I was diagnosed with Asperger’s Syndrome at the age of 32. Sadly, my actions had already hurt many people that I cared about deeply. But in each situation I did not understand what had gone wrong. Like most people with Aspergers, I have very dull mirror neurons, the part of the brain that lets us know what others are communicating emotionally or nonverbally. For the majority of my life, I understood communication only as a way to share information. Think about that for a minute. I did not understand communication as a way to form bonds or relate with other people. This made it very difficult for me to make friends.
Worse, I did not understand neurotypicals’ many forms of subtle communication: body language, posture, facial expressions, hesitation, context, dropping hints, nuances, metaphor, or even innuendo or most humor. To me, every request was direct and straightforward. When we think about how people understand and express boundaries it is almost never through the level of clear and unmistakable kind of communication that I required. I was physically incapable of fully understanding what another person wanted from me or was not comfortable with. My disability left me with a lack of the necessary parts to interpret these signals and act accordingly. I could not understand other people’s feelings because I did not naturally feel empathy and respond with sympathy. The result was that I hurt people’s feelings, even people that I genuinely cared about. People tended to view my behavior as rude or insensitive. Generally people believed that I was ignoring their request or willfully bulldozing their boundary.
I almost always had a very different and undeterred perspective on any given issue than the people around me. My balance was delicate and I could be easily offended or upset. I believed there were rules and best practices for every task, however small. I was cold, monotonous, distant, and clinical in my interactions with other people. The people in my life each slowly responded in kind. Much pain resulted for everyone involved.
Since the missing part of my brain is not something that can be fixed, the situation was eventually resolved through what is called Cognitive Behavioral Therapy. I spent about four years working with trained psychologists and social workers to learn how to intellectually understand empathy and understand what signals to look for and respond to appropriately. I began to understand why my behavior had upset people so deeply and learned to gradually shift through regimented learning. In 2009, while still embroiled in learning about boundaries and neurotypical social skills, I became involved in what would become the longest relationship of my life, lasting to the present. I still make mistakes sometimes, of course. Sometimes the fundamental mechanics of a question are asked in a way that does not produce the kind of answer that the person is looking for and we have a miscommunication. I now know to apologize and understand what they really want instead of getting upset that their question was not properly formulated, but because my comprehension is so rigid, I still make mistakes. I’ve apologized to the people who I have hurt and done my best to listen and make amends.
Fortunately, I no longer have the constant friction and hurt feelings all around me in my daily life. I learned how to blend into a world where most people are not like me. Most of Microcosm’s staff and most people that I have met in the past few years have a hard side seeing my Aspergian traits and will sometimes express disbelief. In these moments I simply have to explain the algebra calculations I do each time I cross the street to ensure the speed of each object in motion and likelihood that it would hit me. Or I explain the equations for calculating the number of pills that I need to order and pack before my next trip or show them the multitude of spreadsheets that inform every decision that we make at Microcosm based on the risk assessment and potential rewards involved.
I wrote Good Trouble: Building a Success Life & Business with Asperger’s because most of my life was about various kinds of failure. I always desperately struggled to understand why my relationships faltered and failed despite my best efforts. After two failed relationships in a row that were very painful for me, I decided that it would be best to socially isolate myself. But instead, I met my current partner by chance and the dynamics in our relationship are unlike anything that I’ve ever experienced before. I hesitated for six years to publicly discuss my Asperger’s because I have been bullied for much of my life in various ways and I knew that having to publicly disclose my diagnosis would result in many people putting my lived experiences and even the diagnosis under a microscope of scrutiny. For most of the last ten years, other people have attempted to speak for me about what my motivations were or how I felt about things. My lived experience was slowly being overwritten with theirs. It slowly made me crazy.
Eventually I decided that I owed it to the next undiagnosed adult with Asperger’s because I know how much it hurts to go through each day, paranoid and nervous, that I will hurt someone’s feelings or have yet another confusing and painful social interaction. And more than anything, an explanation that it can get better is what my teenage self needed more than anything.