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.

 

The Perfect Life

The Perfect Life

Often I have been asked, by conference attendees who come to hear me speak, what I want out of life.  People are curious if my future includes people, independence, and decadence, or a scary isolated existence.  Not that there is anything wrong with living alone, but I do believe most people are shocked when I say “I prefer to live with someone.”

Money continues to be a large reason why I still am not where I want to be, only because we live in a society where access to money is necessary to live.  I’ve tried not to dwell on that too much, and instead try to enjoy each dollar to its furthest reach.  I don’t need millions, I just need enough.  Still, I think there is no harm in dreaming.  It helps us set goals, and is generated from that inner desire to see the word for all its good rather than the bad.  As I have said before, dreaming is the conceptual art of the inner self.

Assuming money is no object, and my life work blossomed just as I had hoped, then what is the perfect life for me?

I love the ocean.  I would want to be as close to the ocean as I could get, ideally in California, though any warm climate ocean town would be acceptable.  The beach at my back door, or at least in walking distance so I could view the waves anytime I needed to be calm.  My plot of land would be the smallest I could possibly have that would allow for my home to fit snugly.  My home would be a Frank Lloyd Wright Usonian style home, possibly like the Jacob’s house or the Goetsch-Winckler Usonian house.  It would have to have three bedrooms, even after my kids move on, because I would want my children to always have a room to stay in anytime they wish to come home.  Being environmentally conscious, I would love to fit the home with solar panels, and use led lighting. The wonderful thing about FLW homes is all the natural light.  My studio would be in home, where I could record, write, and create on my own.

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I’d love to own a Jeep, though I’d love to convert it to a no emission vehicle.  Hopefully, my home would be located in a place where bicycle, walking, or public transit would be sufficient.  I would spend time in town people watching, meeting locals, and learning about the world in which we live.  I would be the owner of an arts school that uses a teaching approach comprised of unconditional love, open to people of all learning types, and offered the most open scholarship program in the US, making sure that even the poorest of students can learn to play an instrument.

Given that my dream means that my financial needs are covered, I would donate most of my free time to helping public and private schools create disability friendly schools with integrated classrooms.  I want the next generation to grow up believing they fit into this world just as much as anyone else.

My perfect life would also include a not-so-perfect someone to live and to share the beauty of life with.  He wouldn’t need to share my interests or be anything like me, just simply be my counterpoint.  You see, to me, love is not like harmony, but really is more like counterpoint.  In music, a harmony supports the melody but is usually secondary to it.  Counterpoint is when two equal melodies are played together to create a complex and intricate sound.  They sound good together, oscillating between supporting the other melody and leading it.  Sometimes the two melodies even argue, but they always resolve in the end.  To me, counterpoint is love.

My perfect life has no specific goals or ambitions for my children.  I would simply just support what ever goals and ambitions they have for themselves, even if I struggled to see it clearly.  Just because we are forever tied together by DNA and by unconditional love, doesn’t mean I have any right or entitlement to insert myself into my children’s picture of their own future.  I must be invited by my children, and continue to love them even if I am not invited.

Finally, my perfect life would leave behind a story that could inspire others, even if it is just one other.  Pain sometimes needs to be shared, so others do not feel alone in theirs.  Yet, beyond that we should freely give away parts of our triumph, not to our own detriment, but in healthy amounts so as to show others that it does in fact get better.  If a spoonful of sugar helps the medicine go down, then be the spoonful of sugar.

There is not much more to a perfect life for me.  Seeing new places in the world is always welcome, and I do hope to travel as a speaker to places outside my home country.  It really is just that calm stability that comes with accomplishment that I seek.

Holiday Donating in a Way that REALLY Helps

IMG_0893Many of you know that I favor donating to small, local organizations that do hands on good with their funds.  Though I do not have an exhaustive list of all the great organizations out there, I thought I would share a few of my personal favorites.  These are organizations where I have met the owners and personally witnessed their generosity in action.  They are in no particular order.

Shenanigans Improv Group – A group that uses improv to help children and teens with autism learn social skills.  http://www.shenanigansimprov.com

Surfers Healing – A group that uses surfing to bring peace, happiness, and bonding to individuals with autism.  http://www.surfershealing.org

SPECTRUM Autism Support Group – A great organization that connects people and resources, and provides wonderful support.  http://www.atl-spectrum.com/donatetospectrum.html

Agnes Scott College – My college and an autism friendly college.  You couldn’t ask for a better college experience.  I would love to see someone set up a scholarship at this school for autistic students.  http://www.agnesscott.edu

Marino Campus – The Dan Marino Foundation is working on an excellent project to help adults with disability receive a post-secondary education for work.  http://marinocampus.org

One of my favorite ways to give is by giving grocery store gift cards to local families that are in need.  It is a powerful gift.  Families can use the card to purchase food they will actually enjoy eating and need.  This frees up their usual grocery budget for buying gifts and allows them to have the freedom and pride of doing their own shopping.  All the major grocery stores have these gift cards.  My favorite is Publix: http://www.publix.com

Keep checking back.  I will add a more as I learn about them.

Laura

The Developmental Corset of Therapy, and How to Break It

I recently read a wonderful post on BBC Ouch, by a guest blogger named Mark Neary.  In his blog, he wrote about how clinical jargon is used in his autistic son’s life, and how sometimes that jargon actually diminishes people’s perception of his son as a person.

I have encountered this same use of clinical jargon in the parents that I interact with as a public speaker on the topic of autism.  No longer exclusive to medical professionals and therapists, parents have adapted the use of more clinical jargon, but why?  Here are a few reasons I think may contribute to the widespread use of clinical terms to describe everything from finger tapping to immense talent in autistic people.

Categorization of the Unknown

Despite autistic people being noted for our need for routine, and logical compartmentalization, all human beings like to categorize.  Don’t think so?  Let’s take a visit by an insect as an example.  A bug, that we cannot identify, annoys a mixed group of people socializing by repeatedly flying into their faces.  At the height of their annoyance, someone swats it with a rolled magazine.  In a world where categorization doesn’t matter, this is where the story would end.  However, we all know that our next step would be to figure out what kind of bug it is.  Unless seated at the table with a biologist, each person would peer over the carcass of the dead bug, looking for familiar markings or body shape.  Some might even poke at it with a stick, in some bizarre effort to “get a better look.”  The conversation would end with some sort of conclusion about the bug, and at the very least, putting it in some familiar category such as bee, fly, or ant.  As you’re reading this, and especially if you are laughing now, then you can probably recall being at this table at some point in your history.

Parents are no different with their children.  Categorization begins at birth with the announcement of the child’s gender.  Based on this outcome, society then directs the parents in choosing a name, room color, clothing, and even toys society has deemed appropriate for the assigned gender.  As the child grows, other categories are used such as finicky, talkative, curious, etc.  Once school begins, categorization is placed in the forefront of all other aspects of the child, including the child’s preferences, and choices, especially those that lay outside of the “normal.”  Society shows parent’s that being categorized as gifted, or advanced are far more important than the child’s effort, as they award bumper stickers for Honor Roll students, but hand out tutoring and summer classes to children who fall outside the categories.  There is no school system wide reward for effort.

Add a disability to this whirlwind of categories, and parents begin to feel attacked.  Behavior modification techniques are put in place from sun up to sundown, personal choices of the child are all but ignored, and personality – the only real thing parents can connect to in their child – is stripped away one therapy at a time.

You think I have gone too far?  Then answer this; before I was diagnosed with autism, people referred to my ability to play violin as a talent, and even called me a “child prodigy.”  Since my diagnosis, my talent is now referred to as a “special interest.”  Why?

I am not at all against therapy, but a problem in the systems and approach by therapy is lacking a key element – the ability to separate personality from problematic, life inhibiting behaviors caused by autism.  The categorization of me into an autism model has provided more answers than problems, but when the diagnosis, and the following therapies, are not assigned limits of application, the diagnosis becomes a developmental corset.

The Blame Game that Follows the “E – Word”

When it was determined that autism was on the rise, society was not happy with simply stating “autism cases are on the rise.”  Instead, we had to resort to the E-word, Epidemic.  Much like the societal use of the words carnage, devastation, and horrific, when describing a negative event that falls short of that description (i.e. no death toll, just a lot of broken stuff, or Roseanne Barr cussing on Twitter) we have loosely misapplied the use of the word epidemic.

Up until the second half of the 20th Century, epidemic was only used to describe the spread of infectious diseases.  The semantic evolution of the word to include issues such as obesity and autism, only seem to be effective because of the sensational panic the use of the word attributes to the population.  Panic sells newspapers and prescription drugs, but it also demonizes everything that contacts the child, including the parents.  Adding epidemic to autism turns simple adjustments into drastic measures; it turns diet adjustments into chelation, therapy into neurological reprogramming, rightful emotional outbursts into aggressive threats that warrant restraint, delayed emotional processing into lack of empathy, and talents into special interests.

Where does this leave autistics?  Often times, it leaves us feeling broken and rejected.  Where does this leave parents?  It leaves parents feeling blamed for not doing enough, doing to much, or feeling like bad parents.  It leaves everyone seeing autism as a problem instead of a person.

It’s Nice to be Recognized

Recently, I had a meeting with three tremendously intelligent NT’s.  (I will not disclose the people or place, only because I do not have their permission to do so).  I had no idea why I was called into this meeting, despite their best efforts to explain it to me.  For so long, I have endured the back handed slaps of a society that could not understand me.  Following my diagnosis, the slaps became heavy handed pushing as I was expected to fix my “problems” and searing my accomplishments, sans college degree, with doubt.  How could I play the violin well and not be college educated or a savant?  Being a child prodigy, being a talented violinist who happens to have autism, knowing something deeply without learning just couldn’t be possible. But, this meeting was different.

As I sat across the table, I caught myself trying to explain myself.  I was guarded, and leery that I would never been seen as good enough.  As these three professionals patiently worked through a conversation with me, I realized I was being recognized and accepted.  What did it take?  What did these three do differently?  After all, they are immersed in the world of autism as researchers, and clinicians.

How is that possible?  Simple.  When they looked at me, they saw a human being, rather than a problem to be solved.  When they listened to me, they heard the words of an expert in living with autism, rather than a failure at living in society.  When they offered their hand shake, they offered their hand to a colleague, not to a child that should be led.  So, therefore, when they spoke, their words were filled with affirmation, and admiration.

Break Off the Corset

An autism diagnosis should lift us, not erase us.  Therapy should empower us, not limit our development.  The next time you meet someone with autism, be in awe of their immense ability to adapt.  Watch us.  Listen to us.  Recognize us.  Call us beautiful, talented, accomplished, intelligent.  See us not as an illegal immigrant, but a visiting Foreign Dignitary eager to make an alliance.  Love us.  And when you must, when we reach out for you, remember you are our seeing eye dog, not our trainer.

– LN

Why Can’t I Wake Up from Autism?

Everyday seems to present new challenges when living with autism.  The overarching feeling is one of pride, confidence and the satisfaction that I have honed in on my strengths while overcoming my weaknesses.  There are times, especially when I am overwhelmed with tasks that attack my weaknesses, that I can’t keep myself from asking, “Why can’t I just wake up from autism?”
 
 
The adult world is full of pitfalls and difficulties for everyone, autistic or not.  We all must balance the ever growing list of things we ought to do with the list of things we would love to do.  Time seems the worst of enemies, strictly followed by the availability of disposable funds and the obligation to others.  We build complex networks around us in hopes we will weave an interdependent fabric with which we can wrap ourselves. 
 
 
For me, autism adds another dimension to the commonly shared adult world.  Life seems to have this invariable push/pull effect on me.  While I push harder to build an existence that is fulfilling, I seem to pull back into my realm of safety with a force that is always exactly proportional to my push.  The harder I work to grow, the harder I fight to remain unchanged.  It’s the part of autism I can’t seem to negotiate with, redesign or repurpose.  This pull is what I call the ebb of my autism.
 
 
I persist with a set of actions, that are never accompanied by reason or emotional motivation.  A brief tour of my home reveals wallpaper torn from the walls, unnecessary labeling, and dozens of unfinished projects all which fall short of their potential in the ebb of my autism.  Just last night, I burned up my third tea kettle when my inability to track time allowed the kettle to stay on the flame long after the water had boiled out.  A seemingly small incident, I know, but when itemized on the interminable list of transgressions, the evening served as a power blow to my motivation.  I began to feel small in a grand world of neurotypicality.
 
 
When I start feeling small, the world becomes a distant light and the end of a dismal tunnel.  I withdraw into an aggregate state of doubt, shame and resignation, which is far more destructive to my sense of confidence than simply feeling sorry for myself.  As the emotions work their way through my various levels of thinking, I am left standing at the door between my world and everyone else’s, much like Jim Carrey’s character did at the end of The Truman Show.
 
 
Sometimes I am so good at pretending to be normal, I forget to feed the parts of me I have tamed and caged.  I must remember that I need places to roam unhindered, or it will be the wallpaper and the tea kettles that take the brunt of me.  I will reflect today, listening carefully to the shadow songs, and the ebb of my autism will turn by the flow of my determination.  I will grasp tightly onto the hope that I can reach an amphidromic point between autism and neurotypicality.  I have worked hard to make room for the world in my earthly existence, an action that has offered up more rewards than losses.  
 
 
In the end, I am proud of being autistic.  Though parts of me are far from seamless, I must not be afraid to ask the world to make room for me too.  Anyone need their wallpaper removed?