The Story Behind River Oasis

The Story Behind River Oasis

Dear Phoenix,

Did I ever tell you about why I wrote the shadow song, River Oasis?

I struggle with knowing who my friends are.  People say they are my friends, but I sometimes get confused with the term friends. Everyone seems to have their own definition of what a friend is, so I just really never know, until a confirmation event.

Confirmation events are small moments when it is revealed to me what a person means when they call me their friend.  In one instance recently, I learned I had a friend when she told my parents how she felt about me.  Her words to my parents, and watching my parents react (something I am quite familiar with now) confirmed that she and I had an equal meaning of friend.

Back when I was living in Atlanta, I was having trouble with your fire.  I know you love me, Phoenix, but that was just a rough time.  I was spending too much time isolated, which peaked one New Years Eve night as I cried myself to sleep.  This really bad night taught me that I could no longer wait for confirmation events.  I needed to create moments for them to occur.

My love of the outdoors and the amazing shadow songs could set the stage, so long as the places we met didn’t compete with the shadow song of the person I needed to understand.  A system of parks along the Chattahoochee River worked perfectly.  The river was energetic, but soothing, erasing out the intense pressure created by the inharmonious relationships that buzzed around Atlanta.  It was present, but not loud, yet loud enough to cancel out the city noises.

I met a friend there, curious if he really was my friend, at a coffee shop right on the river.  It was warm that day, but the cool water created a refreshing mist that was carried on the back of the breeze.  The river song would swirl around us only filling in the moments of silence, but when he would allow himself to be open, his song was the soloist and the river his orchestra.  It worked, and way better than I had imagined.  Within the first visit, I got my confirmation event – a moment of honesty and vulnerability that showed me I was trusted.

One by one I starting inviting friends there to listen to their songs, and look for those moments of friendship clarity. When I started recording pieces for my album, it seemed only fitting that I should honour the river that brought peace to my friendships.

Thanks and love always to you, dear Phoenix,

Laura (Snamuh)

 

Messy Thoughts at 4:00 am on a Cold January Night

Messy Thoughts at 4:00 am on a Cold January Night

If I’m alright
why can’t I feel the pain
wrapped up in a pretty blanket
the sky didn’t fall today

What if I’m a lunatic
with this bag of marbles
and a walking stick
marching on my Neverland
because I lost my fairy dust

Searching for the love I sent
on twenty magic carpet rides
into the dark and hallowed caverns
of your little beating heart

The air is crisp
so words you whisper
holler boldly across the lake
I hear you when you float away
I feel you when you come my way

Sometimes the colours
dull at dusk
but music buys a cape and thrusts
a big bold letter across my chest
brought to you by the letter S

It saves the world from seeing pain
we caused while paying dues and fame
a great big race for Cadillacs
facebook likes and twitter leads

Melodies drown out the thuds
of bodies dropping from tax paid pipes
and then their naked spirits dance
drenched in tears and negligence

Why didn’t we let them
eat cake too
while drawing air to share their dreams
with other kids, and marbles too?

Effortlessly we carry bodies
in empty boxes with velvet linings
but drop the weightless words that feed
the dreams we draw in coloured wax

Jump ropes turn to grids and boundaries
numbers pierce their hopes with data
when we kept drawing chalk line scores
while they were drifting off to sleep

And what of this ransom note
where years past 6 are spent in cells
drop their sticks and pick up swords
lest you be ex-patriots

Don’t let the child in you die
daydreams lead to better lives
skip to work, sing while you pee
leave the chocolate on your face

Not one being should wake to days
where fantasy’s on life support
in exchange for honest wages
in a day or otherwise

Break the glass and pull the chain
the danger lies in staying in
the institutions filled with clocks
and number twos that write for us

Regain your moments of fantasy
take your Harveys out to tea
dance to silence it has a beat
give in to the urge to run

Your inner child is the only cure
for apathy, doubt and confusion
a shift in power is all you need
leave the cynic, take the cookie.

What You See is Not What I See

What You See is Not What I See

What You See is Not What I See

Everywhere around me is music.  I call this music Shadow Songs.  Just as everything around us casts a shadow, everything I see sings its own unique music.  I have published many tracks of my shadow songs.

Recently I visited New York City with a good friend and my daughter as we were bringing her back from college for the summer.  We visited the 9/11 Memorial Site.  In this retelling of my experience, I try to describe the sensory experience it had one me.

For those of you who have not read my book, I Am Snamuh, I may need to explain a few things.  I have a constant soundtrack and dialogue going on in my mind.  My communication is often interrupted by something I call word muddle, which is my mind shuffling through my entire catalogue of words in order to choose expressive language connected to the situation, the sensory experience, or any emotion I am feeling that day.  It is exhausting and gets worse when I am isolated from people too much.  When I talk about word muddle, I am indicating that I have to fight this process in order to digest and respond to the moment.

Note** Word muddle is written in italics.  

Note** [Descriptions of my mind music, shadow songs, is written in brackets.]

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Reflection on the 9/11 Memorial in New York City

There is an obvious pre-tone set by the designers of the memorial as a place of mourning, dedication, reflection, and beauty.  But the pre-tone set by the intellectual meanderings of planners and artists only covers a small aspect of the energy, both musical and extrasensory.

Trees. No leaves. Bending. Sorrow. Mourning doves. Sirens. Lost him.

Each side of the memorial has its own contribution to the sensory experience; as if each of the four winds has a piece of the story to tell.  I could not have predicted this.

[Deep, almost inaudible vibration of noise, as if the earth itself is groaning]

We entered near the South Pool facing North.  The energy was as planned; soft, reflecting, longing, curious, emotional.  Though as my friend said to me, the people standing around effected the energy as they projected their own feelings.  Though I agree, there was still a distinct difference radiating through the clatter of individual energy pulses.

As we walked to face east, the east wind was still and a bit stronger.  It had stayed around to whisper the names of the fallen, like a devoted old pet waiting for it’s owner to return.  Here, I honed in on the shadow songs while trying to allow the energy to pass through me unaltered.

Electric.  Tesla.  Buzz.  Earthquake. Tremor. Passion.

My anticipation of what I would feel was completely wrong, and perhaps marginally influenced by the pre-tone setting I mentioned before. Expecting to hear a choral pieces comprised of distant solitary voices, I was pleased to hear a full symphonic piece.

[deep groans become woodwinds and muted brass]

Facing East and working around to face South, a brass quartet emerges in my minds ear, though to me it sounds as clear as it would if I were approaching a quartet of live musicians.

[quadruple chords, pulsing and progressing in melodic minor]

The music drew in and pushed out in gentle succession like the breathing of a large sleeping animal.  This breathing of the East wind was joined by the clarity and warmth of the South wind, a melody emerged as if it were there to comfort you.

Spinning. Lights.  Trails.

My overstimulation starts to blur and over expose my vision, so I move on.  I am brushed by the West wind, a busy swirl of string instruments unapologetically adding vibrance to the story.  The strings state their wisdom and compassion, refusing to let onlookers forget the fallen were complex people before they became simple memories.

This feeling was rudely interrupted by the confusion of the North wind, lost like a forgotten toddler in the human manipulation of the grounds. To better grasp this part of the story, I ventured through the trees to listen, pointing my hearing towards the North Pool.  Not knowing anything about the memorial grounds before arriving, I did notice one tree singer louder than the others and in opposition to the rest.

[Very faint choral of voices arguing with the voice of a child.  Key changes.]

An injured tree, surrounded by a special rail poked into my peripheral vision.  This tree was intriguing.  It was singing with a wounded soul and the only choral like experience of the day.  The tree with a single child-like voice, told the true story.  Child-like meaning wide open, unbridled, carefree of it’s restrictions.  I found out later it was a loan survivor tree.

The tree’s melody carried me through the grounds until it was abruptly seized by a large, white, fanlike structure that resembled the bones of an animal carcass.   The white building disturbed the energy and was so distracting, I had trouble getting a sense of direction so I could walk another way.  The only refuge came when I stood between two trees, just outside it’s reach, facing the side entry of One World Trade Centre.  The purple and blue lights against the warm colours of sunset rescued some of the momentum that was dispersed by the ill placed building.

[Shadow song fades.  Only child voice remains until it ends in a whisper against muted strings]

What I See

According to my research, most people experience the world visually first and it is then supported by other senses, and often influenced by past experience.  My experience of the world is vastly different.  I am propelled by my sensory perception first, like a neurophysiological processing of the stimuli around me.  My vision and hearing are influenced by that, and my past experience tends to remain cloaked, until it is provoked by negative stimuli.  In other words, I am wide open in a vulnerable, child-like state until I feel threatened.

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An idea of how a scene looks to me when I am over-stimulated. Sunglasses, headphones, hoodies or hats can help.

Sometimes the world looks like an over-exposed photo while other times colours are muted and soft.  Sometimes I appear deaf and need people to repeat themselves to me, while other times my hearing is so sensitive that a conversation in front of me is drowned out by the sound of a pencil on paper across a crowded room.  My system toggles from over amped to dulled without my permission.  All I can do is try to control my exposure.

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An idea of how a scene looks to me when I am sensory flipped and trying to dampen stimuli. Notice my depth perception becomes exaggerated in the foreground, and flat in the background. At this point there is nothing I can do but wait for my systems to power back on. I may need support from friends or deep pressure.

Many miss this detail about me, mostly because they never ask how I am experiencing a room.  Instead they draw conclusions that I am “not that autistic” because my vocabulary is rich, and I am not flapping my hands about.  This creates an illusion that I am not autistic, or autistic enough to warrant any supports.  So, I continue through life creating my own solutions and structuring a one person support system.  It is a level of lonely that no one outside of autism could possibly imagine.

Listen to My Voice

Listen to My Voice

Listen to My Voice

In an interview with NPR’s A Closer Look, my son, Jacob, and I talk about living with autism. During our interview we talk about many aspects of our lives, but one theme is reoccurring – a sense of belonging.  Jacob and I both speak of not having a place to fit into every day society, and how our particular brand of autism keeps us alienated from both the special needs world and the neurotypical world.

 

Not Autistic Enough

Not Autistic Enough

I have given at least 100 presentations on living with autism to crowds of all sizes.  My most requested presentation is entitled Let Me Fall.  I begin with a preview of a documentary made about me called The Shadow Listener, and then introduce myself as being autistic.  

I talk about growing up with autism, undiagnosed, presenting my struggles and my accomplishments.  With a mix of talk, video, and pictures, I show how I couldn’t read until I was 9, and how I couldn’t tie my shoe until I was 14; I talk how I struggled in school and relationships.  The first half of my talk shows all the challenges parents and teachers have learned to recognize as common in autistic people, and they confirm this with nods and verbal confirmations as I present.

Then, the presentation shifts.  I give attendees ideas for supporting autistic people, and helping us reach our fullest potential, and then show my short film Let Me Fall.  As the presentation comes to a conclusion, I focus on the positive aspects of autism, my accomplishments, and how presuming competence was the springboard of my future.

Following my presentations, most people tell me how I have helped them to see autism in a new light, feeling inspired.  I sign books, and answer questions, trying to remain patient with even the most uneducated attendee.  I am not there to make people aware of autism.  I am there to help people learn to accept autism.

Then enter the doubters…

To them, I am not autistic enough because I don’t display stereotypical autistic behaviours.  Many expect to see a mostly non-functional adult, living on government funds or welfare, and who is happily working a minimum wage job doing some repetitive task.  They expect me to say inappropriate things, lack empathy and compassion, move with oddities with my body.  But I am not that person.  

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I get frustrated when people see a child having a tantrum or meltdown, and they assume that person must be autistic.  Somehow our society has inexplicably linked behaviour and appearance with competence, believing that one understands if they “appear” to understand by behaving in such a manner as to fit a predefined model of intelligence. The underestimation of the abilities of autistic people is a deep rooted issue, marginalizing a group of people who cannot always get the space and time needed to speak for themselves.  

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Autistic people whose autistic traits are not outwardly obvious are unfairly diminished from all fronts.  We face having our accomplishments overlooked, our autism minimized, and our experiences ignored as we fail to play out a sensationalistic narrative of overcoming.  We are just not autistic enough to have struggled, and not neurotypical enough to be included.

My experience with autism is just as valid as the next, even if I do not experience autism the way society has temporarily defined it.  

Not Autistic Enough (links will become live as posts are made)

The Empathy of Autism, Part II

The Empathy of Autism, Part II

My son’s own words on how he was led to depression, and how he still sees the world as worth while.

In part I, I talked about my 15-year-old Autistic son, Jacob, and our fight to find services that could aid him through depression.  Consistently roadblocked, we both were stunned that we were taught we lacked empathy, when it was clear to us the world around us had no interest in helping us.

I asked Jacob about the origins of his depression.  Here is what he said:

Ever since the beginning of elementary school, there has been 1 teacher, and 2 to 3 people as support staff available to me. Those four people had to be divided up amongst 6 or 7 autistic kids in various classrooms at different times. Even in elementary school, I knew that was bad math – 4 divided by 7 does not come out to an acceptable number when helping kids with disabilities.

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Jacob with his therapy cat, Faust, just after a tough day at school.

Because the special education teachers were overburdened, there was never enough help. By 5th grade, no support staff was in the room with me anymore. They would walk by my classroom, stay for a few minutes, and then leave. I really did like the people in the program, but they were stretched way too thin. They didn’t have enough people to support all of the autistic students. I understand I was the “highest functioning” but that doesn’t mean that 10 minutes a day was enough help for me.

 

Whenever I felt overwhelmed, or that I needed help, I felt I had to cause a disruption in class. I would get built up with anger throughout the day, and then I would just explode. One time I flipped a chair. Another time I kicked a file cabinet. I knew how to ask for help, but when I went to my regular ed teacher to ask for support, they would want me to find words to tell them about what was bothering me. I would struggle, but then when I would finally tell them, I was often dismissed. The regular ed teacher just didn’t understand how big a deal my problems were for a person with autism. No one taught the regular teachers about me.

I remember one time, we were doing an indoor recess. I was the only autistic kid in my class, and my best friend had been separated from me so I wasn’t “distracted.” I was playing a video game with an NT kid in class, and I won. He was upset he lost, so he punched me. It felt like a hard punch and hurt me. At that point, I recalled they had taught us that when we are hit by someone, we are to stand up and declare it to the class. So, I stood up and said to the teacher, “He just punched me in the arm.” The other kid jumps up with a frustrated voice, “No I didn’t.” The teacher immediately looked at me and said, “Jacob, calm down.” I was so confused, I started to panic. I froze and repeatedly said, “Yes he did, he hit me.” The other students gathered around me, watching me, telling me to calm down. I didn’t understand any of it because he hit me and I did what I thought was right, and now I was somehow wrong.

All of the sensory input caused me to breakdown. I ran over to the cabinet door and

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Jacob being himself around trusted friends.

kicked and punched it, causing a dent. The teacher pressed the “white button” on the wall which calls the main office, to report kids acting up in class. I was then removed by the discipline principal from the classroom. They never offered to take me to the special ed support staff. I was just in trouble. Eventually, the special ed teacher heard what was happening, and came to get me. It was only then, in her room with the person I trusted, that I could calm down.

 

This is one example of an incident that seemed to happen over and over again. I would follow the rules, I would get bullied, but then I would end up in trouble. If I ever got frustrated, or my sensory system got overwhelmed, I would be labeled as trouble. I would watch as the NT kids got preferential treatment from the teacher, especially the popular kids. Every time I wasn’t compliant, they assumed it must be because I’m autistic.

One teacher I had would sit me next to the problem kids, because I was quiet. I really was not a fan of this because it was as if I had to be liked by the teacher, or I had to be liked by the kids I was surrounded by. This teacher saw me as a positive influence for the problem kids and sat me with them. One day I was sitting next to this guy who would fidget with his materials all the time. He was spinning a piece of paper on his desk, so the teacher took it from him. The kid looked upset. I was tired of not having friends so I got up, pretended to sharpen my pencil, and grabbed the piece of paper for him. The teacher got mad at me, and the kid was still not my friend. After class, the teacher asked me why I behaved this way. When I told her my reason, she told me I should not be friends with those kinds of students. I was confused. Why sit me next to them and then tell me to not be their friend?

I saw this as flawed logic. Put a good kid next to a bad kid and hope it rubs off? Since it was based on the opinions of the teachers, in one class I was a good kid here to influence bad kids to behave better, and in another class, I was the problem kid. I already had autism, and now I was being thrust into an identity crisis. If I was a different kid in each class, which kid was I? I had no idea how to act. Somedays I would be quiet, and do nothing. Other days I would cause trouble. I wanted to fit in, and the definition of fitting in was to make a friend while acting like one of them.

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He had a Thomas shirt for every day of the week.

But I didn’t make any friends. No matter who I was, it wasn’t enough. I was always hopping between two extremes, but none of them were me. I was mirroring others. So to the kids, they thought I was just trying to do whatever the popular thing was, so they excluded me, and bullied me. But when I was myself, before everything got complicated, I was told my interests were not age appropriate. I loved Thomas the Tank Engine, and Transformers. I was told Thomas was too young, and Transformers were too violent to talk about at school. One teacher suggested that Thomas be my “secret obsession.” I was in the 4th grade.

 

I was supposed to be in school to study academic subjects, but every day was about molding me into the cookie cutter person I was expected to be. Everything that came natural to me was wrong, and no one focused on my strengths. Once I was in middle school, the teachers pushed me harder to perform better academically, but I had not gathered the necessary study skills. I was constantly in social correction mode, and being directed what to do every minute of my day. The academic material wasn’t even interesting, and certainly below my level of learning. School was repetitive, and there was no free thinking. Read, answer questions, write two paragraphs, but be careful not to write your true opinion or you might get a big red “x” on your paper.

I just didn’t fit their expectations, and I wasn’t amenable to shapeshifting.  After a while, I started to hate myself.  This all led me to depression.

On Being Homeschooled

Once I pulled Jacob out of school, he still found it difficult to get through course work.  So I asked him about being taught at home.  Despite the benefits of the home environment, we still were stuck adhering to curriculum developed for neurotypical minds.

Right now, I am being homeschooled and I have no idea how I feel about it. I can look at my life objectively in hindsight, but I can’t create solutions for problems I currently have.

I want to go to college. I know I have to complete high school to get there, but I don’tIMG_2239_2 really want to waste my time with high school. I find it difficult to see the relevance of the topics covered in high school, which seems like tedious busy work. I would just take the GED, but you have to be 18 to take it.

I want to learn new things. I love learning about almost everything in science, but especially astronomy, and technology. Social sciences are pretty interesting too, like psychology and sociology. But I could care less about how a cell divides or what a billion-year-old rock is made of.

I want to live independently. I want a nice place to live but it doesn’t have to be large. I want a job that interests me and utilizes my talents.

I want relationships. Someday, I want to have a life partner, but I have not decided if I want kids yet.

I want to have time for friends and enjoy hobbies with them

I want to be healthy, and live a long life.

I want education to be accessible to everyone, and not just to kids. Everyone, no matter their age or origin or finances or disability should have education accessible to them at every stage of life. People should get to explore their passions without having to worry about what is correct for their demographic category. If a 60-year-old woman likes transformers, that should be ok.

On Depression and Fitting In.

I feel like 10% of my depression is chemical, but about 70% of my depression was caused by the stress from school. The remaining 20% is just normal life struggles that people are supposed to feel.

For one thing, it is not very fun to listen to people tell my mom that my depression is due to laziness, or that my mom wasn’t hard enough on me. The fact that Medicaid isn’t accepted by a vast majority of doctors around me really shows that when people say Autistics don’t have empathy, they haven’t looked at themselves.

 

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At the lowest day of the depression.  He had lost weight & could not get up.

Why should I die from depression just because I am poor?
Why should my depression be any lesser or treated differently, just because you don’t understand my autism?

 

I am grateful for having my mom to help me. I feel like her trusting me really helps me, but when I show signs of being in a critical state, she doesn’t leave me alone. She has never ignored or diminished my problem. She always took me seriously. Sometimes, it was really annoying when she would try to get me to talk, but sometimes it did help to talk it out. She would just wait in my room until I was ready.

The kids at the school where my mom teaches made me feel accepted and normal, an adjective I can’t usually use to describe myself.

Not saying that they are weird by comparison because that is not what I am trying to imply. It is just that to them, I am not seen as weird, we are equally weird – we are unique.

 

Conclusions

Despite being misunderstood, Jacob still wants a world where everyone can learn, and explore their passions.  His desires are not too different from most people – family life, a good job, friends, and hobbies – but he carries no bitterness about the world.

As our evening came to a close, I asked Jacob what he really wanted for himself.  If there were no barriers, no rules, no curriculum, no social norms, what would he need to attain the life he wants.  His answer was eloquent, yet simple;

“I need help developing new ways for me to access college. I can get there, but I can’t get there your way. I want to be me, and I want that to be ok.”

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Explore a gallery of Jacob’s talents

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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.

 

Inside a Meltdown with Autism.

Inside a Meltdown with Autism.

I had a meltdown today.  This is what it is like for me.

We often put autism on parade through television and social media, as we portray the meltdown as uncontrollable violent outbursts that endanger everyone around them.  Meltdowns happen to just about every autistic person, and is the term used to describe any kind of system shutdown or emotional overflow that occur after over stimulation.  Each person with autism experiences their meltdowns in different ways.  As a child, I was much more prone to fits of crying or screaming, especially when I was frightened.  As an adult, I freeze and disconnect from the world.

As a public speaker, and one who is vocal about having autism, I am regularly put under the microscope.  More times than not, I am able to navigate my autism.  Focusing on my strengths, I come across to crowds as confident; but I am also scrutinized as not understanding the full spectrum of autism as I appear to them “high functioning.”  I have heard the words “but you are not autistic enough” or “your autism must be pretty mild” or “you must be higher functioning than my kid.”

I dislike the terms higher functioning and lower functioning because it pulls our focus from a competency model.  Just because a person with autism is non-speaking or has trouble controlling their movements, does not mean they are lower functioning.  In fact, many of my non-speaking students and friends are exceptionally bright people, who struggle to get their bodies to reflect their thoughts.  One of my non-speaking students compared herself to Stephen Hawking, bright on the inside, but frozen on the outside.

Throughout the varieties of autism spectrum disorder, most of us see our autism as much a part of us as our race or our gender, something that cannot be cured our removed otherwise it would change us too much at a fundamental level.  So, we focus on strengths, working each day to grow and influence our world.  When the meltdowns overcome us, we withdraw, self-heal, and start all over again.

This past Sunday, I had one such meltdown.  With so much change in my life, though all of it positive change, my world is unstable and difficult for me to navigate.  I am saying goodbye to friends, building a new business, taking on my 15 year old autistic sons’s challenges, and far away from people I care deeply about.  These are emotionally charged changes, which I do not handle as well as logical problems.  My emotional vibrations within, which I call the Phoenix, become so overwhelming they are consumed by their own fire.

Instead of retreating to my room, I decided to turn on my webcam, allowing you an inside look of what a meltdown is like for me.  Every autistic person experiences their meltdowns in their own way, much like people grieve in their own way.  My experience might not be the way for other autistic people, but by sharing I hope you are able to approach other autistic people with compassion, love, and a deeper understanding.

As always, be kind and love louder.

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.