Coexisting with my neurological roommate, autism.
While traveling with friends this past week, I got to visit a lakeside park in Toronto. We walked down a gravel path and onto a small beach that was nestled into a sheer rock cliff. The clean, crisp strength of the rock gently draws the eyes around the cove, until they are lifted by the trees to the bristly skyline balanced on the edge of the horizon. Drawn by the sounds of the lake slapping the coastline, I stopped at the edge of a rock jetty, faced the wind, extended my arms, and opened my soul to its song.
The energy of the wind was excited and quick, like a herd of wild horses galloping atop the water. The lake’s surface was reaching up to tickle the wind in playful contrast to the deep, sombre lake bed that rested below. Though my feet felt as if they were slowly sinking into the rock, the crown of my head was lifted towards the sky by the dusty, warm colours of the sunset. It was a wonderful moment, not metered by the impending sunset, but by the rhythm of the shadows.
My autism is my strength, and a powerful piece in my life, that allows me to view the world as an acoustic tapestry. Yet, I cannot escape the fact that my autism is also a tiny rowboat, traveling the sea alone amidst a world of ocean liners and yachts. To overcome the elements and travel the waterways by rowing alone, is a way of life that requires tenacity and boundless energy. But when I tie up my little row boat in the harbour, most people would rather I go elsewhere. I would imagine this is the way the homeless must feel.
Only a handful of times in my life has anyone wanted to join me in my rowboat. At first, the boat feels crowded and heavy, but the warmth of company quickly overcomes the challenges. Over time I slowly let my guard down, and suddenly the tiny rowboat seems like ample space for others to join. Sometimes, they even help me row. Perhaps my connection of friendship is expressed in highly unusual ways, but it always feels as if the connection is deep, and understood. Riding in my rowboat quickly fills with laughter, intellectualism, and an ever deepening human connection. A simple beauty.
Inevitably, just before I completely let my guard down, others grow weary of my tiny rowboat. The reasons tend to vary, but usually follow conclusions built on a partial truth. The most frustrating part of coexisting with autism is the pure fact that inside does not always equal outside, intent does not always equal action. Fighting my body’s constant mistranslation of my mind is exhausting, and often means I have to explain my intent after fielding the emotional reaction of the other person. I am sure it is also exhausting for those who try to love me, as a friend or otherwise.
Very few understand that I am a vibrant individual who happens to coexist with autism.
Translating myself is the most difficult aspect of my autism, at least internally, but there is something that is worse; fighting other’s misinterpretations of me. Very few understand that I am a vibrant individual who happens to coexist with autism. Without the complication autism brings me, I am an extrovert, social being, who loves adventure and meeting new people. I am neurologically conjoined with autism, who is an introvert, introspective being, who prefers routine and observing people from a distance. Since autism is a neurological roommate, the battle between traits that are diametrically opposed to one another requires internal negotiations for peace on a daily basis. I cannot simply ignore what I do not like.
However, autism is not defined this way to the general public. People learn autism is a diagnosis, a disease, and a creature that somehow devours a personality. I am often greeted with expressions of shock and disbelief when others hear me state that I love people. If I have autism, must it mean I do not like people? Must it mean I prefer to be alone? No. It simply means I have trouble predicting human social behaviour and reacting to it in context, in a socially appropriate way.
Autism does not make me a static individual who remains defined by the rigid diagnostic criteria.
Even people I consider close to me, who are often on cue about my intentions and conclusions, can be dead wrong about me. One part of me that even my closest friends have difficulty comprehending is that I do break patterns – I do change. Autism does not make me a static individual who remains defined by the rigid diagnostic criteria.
I am forever conjoined with autism. The prospect of a cure, or any act that would permanently sever me from autism, means that a part of me dies. As with any conflict, internal or otherwise, euthanizing the opposition is not the answer. I wish to make peace with my autism so that I can benefit from the myriad of positive traits autism brings to my life. As my needs change, as my life evolves, my peace negotiations move to different areas. I believe that it also means I work to change my brain, much like Rudiger Gamm reallocated areas of his brain to do math.
To the outside observer, the most shocking thing I can do as a person with autism is change, and that should not be the case.
To the outside observer, the most shocking thing I can do as a person with autism is change, and that should not be the case. My personal evolution is exciting, and my conclusions can be fluid. Though I know the concise way of communicating this is often lost in translation, I can only be responsible to a point.
The rigidity of the observer often constricted by the diagnostic criteria is part of the issue, but more often it is the binary concept of normal and abnormal that gets in the way; If I am not autistic, I must be normal, or if I am not normal, I must be abnormal. As a society, we often fail to see the complex scale between normality and abnormality. This becomes most frustrating as my growth is masked by this conclusion. Small gains in my peace negotiations between autism and the person also known as me are misinterpreted, misunderstood, or remain completely unobserved since they are neither autistic nor typical. It is as if I am the modern day Chang and Eng.
The lack of this specific type of recognition is painful for me. This has nothing to do with seeking approval, nor is it set in my expectations of others. Recognition is part of the system built by society as being the marker for progress and success. But instead of recognition, my growth is often bookended by long periods of rowing alone.
So today, I am back to negotiating peace. My rowboat is filled only with the shadows of music, gently laid over my lap to keep me warm, as I continue searching for adventure. Next time you see a rickety little rowboat, seemingly out of place, docked in the quay, perhaps you will think of my story. Just remember, the strength of the rower is never reflected in the construction of the rowboat.
“I am forever conjoined with autism. The prospect of a cure, or any act that would permanently sever me from autism, means that a part of me dies.” – I think that is one of the most powerful passages I’ve ever read.
I hope so much that you and your ‘neurological roommate’ find a way to make your peace with one another, and with the world in which you find yourself.
It’s a challenge every one of us faces to some degree, although your spectrum of perception brings it into sharp focus.
Thank you for a fascinating and moving post. It helped me to understand better, and that’s something I need to do.
[…] Source: The Tiny Rowboat […]