The Tiny Rowboat

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.

rowboat-756934_1920My 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 dothe-fog-warning 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. Toronto_peace 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.

 

A college bound teen, a pirate, & a Toronto sunset.

How a road trip with a friend softened the emotional confusion of autism.

It is not often one gets to travel to a foreign country with a local guide.  Locals can pull you away from the negative chaos of tourist traps and help set you in motion wi20150814_180340th the rhythm of the the local vibe.  Energy assimilation is everything if you really want to experience something new.  The people radiate energy they have carefully constructed over their time being a resident.  The buildings reflect that energy, spreading that energy from building to building much like satellites beaming information signals that can be intercepted at anytime by our internal machines.

As someone who is autistic, I am particularly sensitive to this energy emitted by societies.  Much of this is channeled through my Synesthesia like experience constructed of chords, melodies, and drum beats.  Shadow songs, as I like to call them, are the fingerprints of the places I visit, connecting me in a deeper way, transcendent of the immediate bombardment of daily noise made by the human equivalent of chest beating through chatter, engines, and waste odour.

This is also an emotional whirlwind, something many people outside the autism experience fail to recognize.  As I adjust to the world around me, I am tumbled through layers of emotions, costumed by physical reactions.  I am not without emotion, but rather blanketed in it with so many layers that I find it difficult to unwrap.  As I digest a new place, I must tolerate the ebb and flow of intense neurological misfires, much like walking through a crowded new space as someone repetitively flips the lights on and off.

This trip took my friend, let’s call him Billy Elliot, and I on an adventure as escorts for my daughter as she enters college in western Massachusetts. To round out the trip, we decided a side step to Boston was in order, followed by a short tour of Toronto, a city to which I am trying to move.  The emotional response to leaving a first born child at college is interesting, and highly complex.  Emotions oscillate from excitement to utter fear, through a type of parental pride, and into a strange sadness with a bittersweet coating.

Billy Elliot seemed to be intuitively right on cue, whose mere presence became an embracing comfort, wrapped over me like a warm, weighted blanket.  Aside from his warmth, the local colour added moments of joy to the trip.  While navigating the public transportation system of Boston, we met a pirate.  Not a real pirate, per say, but a man 20150814_172551who played a pirate at theme parks, and who was every bit living the role.  Proud of his picaroon heritage, he sported shark tooth ear rings, tattoos, and the appropriate amount of facial hair.  Should it have been socially acceptable, I believe he would have carried the role to include blackened teeth, but apparently his pirate’s life comes with a decent dental plan.

Searching for a way to keep my nervous system grounded while riding the public bus, I tapped into my supersonic hearing, honing onto the musings of the pirate, who now sat towards the back of the bus.  Like a proud father of a famous sports player, he described in detail the many pictures of himself as a pirate on the job to the innocent Bostonians in seats surrounding him.  Quite honestly, it was the perfect precursor to the afternoon which would end up including an invisible man, street dancers, and an Italian Restauranteur with rather defined opinions on credit card companies.

Throughout the day, all I could think about was wanting to be near the water.  We crossed a nightmarish bridge that spanned the water a few times, but I knew I wanted to be closer.  I turned to Billy Elliot and requested we dine on the water’s edge.  Though we were able to find a sufficient dinner spot, it was only near the water, not on it.  As we concluded eating dinner, I was pressed to the floor by a strange force, like being compressed by a large, heavy machine.  Overwhelmed, and trying not to show it, I denied Billy Elliot’s offer to walk to the water edge, to which I am certain he was perplexed.  As we awkwardly walked back to the train, my joints began to hurt, and eventually I was so overcome by confusion, I could not have directed myself back to the train on my own.  I backed off several steps, following my daughter and Billy Elliot.  Everything seemed so small, and I had no idea why.

20150815_192904It would take two days before the reason for the compression would reveal itself.  Through a pleasant day at Niagara Falls, composing my new shadow song, and through the fun laughter of taking a road trip with a friend.  Nightfall on the second night would be the night the emotional well would overflow.  Struggling to understand my emotions surrounding my daughters new adventure, I snuck out of the bed (so as not to disturb anyone), knelt upon the bathroom floor, and cried.

Now in Toronto, I awoke to an intense need to walk.  I showered, dressed, and grabbed my smartphone.  Assisted by google maps I churned out vigorous steps, one after another, as I made my way to the grocery store.  Each step sent a vibration through my body that began to heal me.  By the return trip, I was walking with an air of confidence and peace I was desperately needing back in my life. 

The people of Toronto are a stark contrast to the people of my hometown of Atlanta.  I was pleasantly surprised by the openness and unassuming eye gaze.  Random, soft greetings by others on their morning strolls, coupled with their unbounded desire to live among the people of their town, helped me to feel a sense of home.  As I concluded my walk, groceries in hand, I stopped just outside the walk to the place where I was staying.  I inhaled deeply and calmly realized, I am exactly where I should be at this exact moment in time.

The segway of energy flow from the morning to the early afternoon was slightly cumbersome.  The city was bustling with visitors for the PanAmerican games, and the Toronto Blue Jays game.  I enjoyed watching the people interact from the safe padding of the car, allowing me to view the city perhaps the way neurotypicals view20150816_191213 it, without such an assault on the senses.  Once we navigated through the city, we walked to the ferry port.

Standing at the ferry port to cross over to some islands on lake Ontario, I struggled to hold onto that peace.  Fortunately Billy Elliot had invited his friend, let’s call him Glen Levitt, and his delightful puppy.  The dog, though I am not typically a dog person, seemed to personify my own neurological battle to cope with the surroundings.  At one point during the ferry crossings, I found myself knelt down again, but this time I was able to focus my response on comforting the dog.  The dog and I provided support to one another, further enforcing the concept of therapy pets.

As the day came to an end, Billy Elliot, Glen Levitt, the puppy, and I stood lakeshore opposite of the city.  Merely inches from the waters edge, I stood upon the “rock-stop” beneath the support leg of energy that burst from Toronto.  The symphonic flow of light sparkled off of the energy waves, composing a piece of music so grand, yet modest in its upbringing.  Random and beautiful, like a chorus of butterflies, yet powerful like water crashing at Niagara, Toronto snuggled deep into my chest, begging to be loved.

Billy Elliot, by this time was seeming more settled in.  Though my presence may have caused a ripple in the flow of his daily life, it was feeling more accepted than before.  Excited to show me the lovely parks of his hometown in the Toronto suburbs, my shadow songs began to play loudly.  Grand willow trees, and the sight of children playing with their families,

made the stroll pleasant, ushering in a new brightened sense of contentment.

Saying goodbye was a tender moment.  The tango with friends is always equal parts desire and adjustment, but by the last sunset, it felt as if the choreography was beginning to flow.  When people chemistry is coupled with the holistic presence of a city like Toronto, you never want leave. 

As for my daughter?  We will forever hold the memories of this trip close, fondly looking back on it as the first day of our new life adventure, played out on a bigger stage.

Autism Awareness is in My Blood

Despite all that has gone wrong these past few weeks, I still feel it is important to do my part for autism.  Awareness is a huge effort and must be given our best efforts.  Since the 1970’s, the Autism Society has set aside the month of April to celebrate autism awareness month.  Many American’s join in with ribbion wearing, blue lights on the porch, and a host of community events.  Other organizations, such as Autism Speaks, has taken this idea a step further with World Autism Awareness Month in an effort to make autism awareness a global collaboration.  The movement is growing.April is certainly a big month for autism, but what about the year round efforts of smaller groups?  One such group that grabbed my attention was The Six Degree Project.  Spearheaded by autistic student Carly Fleischmann, and students Emily Albert and Mia Kibel, these students didn’t wait for April.  This group of students from Northern Secondary School in Toronto, picked the often frigid month of February to raise awareness for autism.  The project sent long, warm, blue scarfs to celebrities and patrons, asking them to wear the scarf during their public appearances, and then post the photo to the Six Degree Project’s Facebook page.  Acting as a wonderful metaphor, the scarf seems to illustrate the warmth that grows in the heart of the communities who embrace autism by spreading a positive image.

I was so moved by this concept, I immediately contacted the group.  They promptly responded to my inquiry and seemed excited that I wanted to participate, despite my non-celebrity status.  Delighted, I sent in the form an awaited the release of the scarf.

The package arrived on a cold, wet afternoon.  Ecstatic, I ripped open the padded envelope right there at the mailbox.  It was like I was a child receiving a special delivery from Santa!  I was pleasantly surprised to see quality and detail in the design, and that the scarf was long enough to be utilized as more than a decorative item.  I was pleased.

It didn’t seem enough to just wear the scarf.  I had been planning for months to make an autism awareness music video that would shed a positive light on autism, and the abilities of autistic people.  With the scarf as inspiration, I picked the song You Raise Me Up, laid out the storyboards, and began the search for participants.

Since autism is such a sensitive topic for many parents, I struggled to find families willing to brag about their autism.  At first, I was deeply disappointed by the lack of involvement, but then I realized how much we needed to make this video.

Frustration during a creative project is unavoidable, it seems.  Creativity also seems to be accompanied by a truck load of self-doubt.  Perhaps this is how we stay humble, or how we keep therapists in business.  Whatever the reason, I was 2 days from the deadline, and practically paralyzed by my erratic executive functioning skill set.

Not knowing where to turn, I texted my good friend Anna, “Why aren’t I happy with anything I am producing today?”  Using the exact number of words she knows I need to not be overwhelmed, she eloquently replied, “Because your ambition is being held back by your means.”  She was right.  Budgetary limitations and lack of access to programs has been a huge burden on my process.  Why were my means limited?  I am a hard working, productive member of society, but I just can’t seem to get that leg up I need to be truly independent and financially secure.  I didn’t need to make this project only for the Six Degree Project, I didn’t need to make this project only for the parents who feared being public about autism.  It was apparent that I also needed to do this project for me.  With a renewed sense of energy, and the positive reaffirmation of my good friend, I dove head first into the video.

Working until the early morning hours on the eve of my 36th birthday, I completed the autism awareness video.  The video below is on my YouTube channel http://www.youtube.com/user/liquidc2

Visit my website for more information on what I do, and to watch the official countdown timer on the homepage!  http://www.lauranadine.net

Don’t forget to visit The Six Degree Project and show your support by purchasing a scarf.  http://thesixdegreeproject.com/

I am proud to support autism and the creative movement started by The Six Degree Project.  I hope the world will one day be warmed by the love that comes with awareness, and acceptance.

Laura