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.

Boycotting Autism Speaks is not enough.

WPIniI am Laura Nadine, entrepreneur, single mother of two children, and I am autistic.  Autism has made it into the news quite a bit over the past decade, and most recently under the hashtag #BoycottAutismSpeaks.  Despite the seemingly sudden growth of Boycott Autism Speaks, this fight is not new.

Back in May of 2013, I composed a blog post entitled The Autism Industry and the Glare of the Blue Light, warning about the poor business practices of organizations like Autism Speaks, and the ever growing multimillion dollar autism industry allowing organizations to pocket over-inflated salaries by using scare tactics and propaganda.  But I thought I was alone in my stance, often ridiculed by parents of autistic children, and at times even told to keep my opinion of Autism Speaks to myself when speaking in public.

What led me to post against Autism Speaks?  It started in September of 2009, when Autism Speaks released their I Am Autism video, painting a picture of despair and suffering in the lives of autistic people. This video used the scare tactics common in the Autism Industry, and caused such a backlash that Autism Speaks eventually pulled the video. 

Following the video’s release, I spent time researching Autism Speaks and how they spent their money.  I spoke with local organizations to see from whom they received their funds, and what services they lacked due to poor funding.

Finally, by 2013, I decided to make my position official by writing about it on my blog.  This move cost me making 2013 my poorest year to date, and nearly forcing me to close down my business.

I looked to others in my local autism community  to speak up, But the conversation had grown silent.  People were afraid to speak against the autism industry.  They were afraid of losing what little funding they did receive.

You see, back in 2009 when Autism Speaks released their I Am Autism video, organizations comprised of Autistic individuals such as Autistic Self Advocacy Network (ASAN) were in their infancy.  Non-speaking people with autism were often kept in restrictive programs with little or no access to supports that presumed competence in the person with autism.  Instead, many members of the autistic world were kept silent, assumed incompetent, and often medicated to the point of lethargy.

But, because of organizations like ASAN, and the continually increasing network of autistic people, our voices are growing louder. Methods like RPM (rapid prompting method), a method that teaches non-speaking autistic people to communicate with a letter board, and increased access to assistive devices such as tablets and smartphones, previously excluded autistic people are now joining the movement.

What movement is that? Empowering people with autism.

Despite the growing movement, Boycotting Autism Speaks is simply not enough.  So what can you do?

In my article on the Autism Industry, I gave a few suggestions.  But it all essentially boils down to redirecting your funds to organizations that include autistic people in their decision making.  Organizations such as ASAN can always use funds to help improve the quality of lives of people with autism.  In my hometown of Atlanta, organizations such as Shenanigans, The Hirsch Academy, and Spectrum are hands on organizations that use their funds to develop strong, autistic voices.

But I want to see even more.

A few years ago I sought out a way to give to and recognize autistic people without the red tape often associated with government programs.  I outlined a way to give to autistic people directly, calling it the gift of the White Phoenix.

Shortly after, I created the White Phoenix Award, an award given to special needs students who have shown tremendous effort in school, but still could not get the high grades necessary to be recognized with academic awards.

Now, I want to grow this idea into the White Phoenix Initiative.

The White Phoenix Initiative is a call to action for colleges, universities, and community programs to sever their ties with the Autism Industry, and lean away from the cure model, embracing instead the achievement model.

Universities, such as Georgia Tech, CALTech, Yale, and the hundreds of other institutions of higher learning across the globe could unite with ASAN and autistic individuals to help make college more accessible.

Organizations such as the Bill and Melinda Gates Foundation, Google, Amazon, and Apple Computers could funnel donation dollars into college scholarship programs for people with disabilities who often cannot qualify for most existing merit based scholarships.

People with autism, and achievement model based organizations, united together under the symbol of the White Phoenix, could help Autistic people regulate organizations meant to help us.  Much like the USDA stamp on food, the White Phoenix could be used as a way to symbolize the trust of autistic people. An autistic seal of approval, if you will.

To help this grow, we have to unite the voices of autistic people with large scale organizations that have the finances to grow programs quickly, and the desire to see us succeed.

Therefore, I encourage any of the organizations I have so far mentioned, to contact me to organize a meeting to take place on google hangouts.  Our purpose would be to initiate the use of the White Phoenix stamp of approval to help people donate to trusted autistic organizations instead of Autism Speaks.

Like the Phoenix, we can rise from the ashes. Our united voices are white hot, and burning a lasting movement of change into the global consciousness.

So let’s rise, let’s unite.

Repair, Realign, Restructure – The Three R’s of Special Needs Education

Repair, Realign, Restructure – The Three R’s of Special Needs Education

IMG_1434I just finished reading a remarkable post by the author John Elder Robison, Early Intervention or Not.  How Do We Decide? .  I had an opportunity to perform at The International Meeting for Autism Research (IMFAR), the same conference Mr. Robison attended, and converse with a few professionals during the opening banquet.

His insightful post brought me back to an idea I had talked about on Facebook on March 28th when arguing why I do not call my services “therapy.”  I mentioned the concept of the three R’s of special needs – Repair, Realign, Restructure.

Most parents want for their children to grow up to be healthy, educated, and independent members of society.  When a parent is faced with a diagnosis such as autism, no matter what age, the news brings about fear and trepidation.  This fear occurs mostly because the trajectory the parent had imagined for their child’s life is now viewed as uncertain.  It is natural to fear the unknown.

Naturally, the parents look for resources on what to think, how to cope, and what do do next.  As society focuses on the headlines generated from the autism industry, we begin to develop literature that presents success as only being possible after a host of interventions, and therapies – and the earlier the better.  But as Mr. Robison pointed out, this barrage of constant services on autistic children may be masking talents. (Mr. Robison makes an exception for children with self-injurious behavior, which I think is important.  I am not at all suggesting that children who injury themselves should be left to continue the behavior.)

Therapy, save private one-to-one therapy provided by a Psychologist or other qualified professional, is focused on what I call the three R’s of special education – Repair, Realign, Restructure.  This is because therapy addresses autism, or other diagnosed disorder, as a whole as if the therapy were some kind of antibiotic.  Rather, therapy should focus on specific complications that hinder that individuals ability to lead the life he or she so chooses to have.

In my own life, I have found my heightened sense of hearing an asset in my quest as a musician.  This quality comes to me as part of the autism package, along with less desirable problems like sensitive vision and overstimulation problems.  However, to pursue therapy for my entire sensory system would remove the hearing I rely on as a musician.  Instead, I have focused on learning how to build an internal gate for my sensory system when I need to shut it down.  How?  By tapping into the other side of my sensory system oddities that come with the autism package – numbness.

Many autistics talk about going from overstimulation to numbness with their sensory system.  Parents may recognize this when they observe their autistic child covering their ears at one moment, and then observe them “acting deaf” as they stare at a blaring loud television.  I saw this problem as an internal resource.  It occurred to me that if I have the ability to go numb, then there might be a way for me to decide when I will go numb.  Using breathing techniques, sitting with my hands on my thighs, and then focusing my mind on the feeling of numbness, I am able to avoid a meltdown in a loud, crowded room.  This may not work for every person with autism, as we are all individuals, but it worked for me.

The buffet of therapies available to the autism world are not useless, but perhaps they are misapplied.  If the therapy is for autism as a whole, and focuses on repairing, realigning, and/or restructuring the person, then we are building a population of socially engineered people.  If we use therapies available today to focus on issues of autism that hinder the individual from growing, then maybe we build a therapeutic atmosphere that allows the growth of a population of unique individuals who just happen to have autism.

 

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.

Image

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.

My Reaction to Sandy Hook, and the Asperger’s Blame Game

Tragedy
 
When I first heard of the tragic shootings at Sandy Hook, I literally didn’t believe it.  With all the bizarre apocalyptic talk in regards to the Mayan Calendar, I thought maybe someone started a horrible rumor.  But it wasn’t rumor.  It was a real, heart sinking tragedy that took the lives of children inside an institution built for growing young minds.  Not knowing how to react, or what to say, I did what most people did; I signed an online sympathy card, I read news articles, and I liked Facebook posts that showed sympathy and love for the victims and their families.  Filled with sadness, uncertainty and fear, I stood in silence wondering what I could say.  I reacted as a sympathetic American.
 
It didn’t take long for the media to start in on the experts as they ripped apart the shooter’s life to find a cause.  When we experience a tragedy of this magnitude, we want to ease our pain with explanations, and if possible, with justice.  We ask questions like; Why did he do this?  What can be done to bring justice to the victims families?  How can we prevent this from happening in the future?  As an American, and a parent of school aged children, I asked these questions too.
 
 
 
Then it happened.
 
Reports began to flood the internet that Adam Lanza, the 20 year old shooter, had Asperger’s Syndrome.  Story after story hit the airways as the major news conglomerates scattered to find “experts” on autism, education, mental health, and psychiatric medications.  Arguments ensued and fear crept in, like a damp, heavy fog that obscures the shore from the sailor.  Before the 72 hour mark following the massacre, Asperger’s Syndrome was being blamed for the violence.
 
Autism Speaks and the Autism Society of America began to report an increase in calls to hotlines over concerns of the autism link to violence.  Autistic individuals became fearful of leaving home as the hate talk flooded the comments portion of internet news publications.  I became so overwhelmed with the hatred, fear, and attacks that I began to shut down.  

In an attempt to stay connected with those who read my social media posts, I wrote, “We must be careful when we say ‘mentally ill.’  There’s a big difference between mentally ill and disabled.  Autism is not an illness, it’s a perspective on life that is neurologically influenced.  I’m not ill.  I’m me.  I hold hands with autism.
 
I really had no idea what to say or how to react.  The fact was there was no official report that proved Adam Lanza had Asperger’s.  I began to wonder if this was some sort of publicity stunt to validate the recent decision of the APA to remove Asperger’s from the DSM.  After all, who would want the diagnosis if it were to be associated with violent behavior?  My mind bounced from thought to thought trying to understand how I, an Autistic American, was now under attack.  I was now afraid.
 
 
 
The only thing worse than tragedy, is the injustice that follows.
 
We have been here before.  We have sat in the judgment seat and strung together loosely correlated events, only to assume causation.
 
Remember when it was thought AIDS was a gay disease?
 
Remember when it was thought that the black color of an African-American would rub off?
 
Remember when it was thought women were too stupid to learn to read?
 
Remember when it was thought that Jews were an inferior race?
 
Remember when it was thought that men placed a whole being in a woman, for the woman was just an incubator?
 
Remember when it was thought the world was flat and at the center of the universe?
 
Remember when it was thought the world would end on December 21, 2012 because the Mayans said so?
 
The human race, in order to fulfill a void in their own lives, seek reasons to the unexplained.  When we add fear to that basic human motive, we dilute our logic and begin to accept myth in its place.  Like a mental deer tick, the myth grows by rooting itself into fragments of logic and reason.  As it grows, it secretes into us an illness, better known as illusionary correlation.  This is a cognitive function where an erroneous inference is made about the relationship of two events.  Even if the two events are infrequent, the mind searches for more pairings of similar events, reenforcing the bond between them.
(source: http://www.sciencedirect.com/science/article/pii/S0022103176800066)
 
The stereotyping of autistic individuals as prone to violence has produced an atomic sized social blast that will live a half-life for many years to come.
 
 
It’s never too late to say you’re sorry
 
What can help us heal?  What can help us refocus our attention on the points of the Sandy Hook investigation that may lead to real answers?  How can we restore faith in the autism community?
 
Easy.  Every major news publication and television broadcast that jumped on the “Adam Lanza had Asperger’s” bandwagon, should issue a public apology to the autism community.  Knee-jerk reactions are expected when dealing with the enormous grief that follows unexplained tragedy, this we understand.  Autistics are human.  Autistics are compassionate, and we are empathetic to the families who lost a loved one.  But these grieving families do not want their loss to be dirtied by hate bantering and stereotyping of a group of citizens.  We all want answers and actions that prevents such violence from happening again, but we don’t want to grow hate.  
 
The grieving families and the autistic community deserve an apology from all the major news networks and publications.
 
 
Autistic communities around the world should bond with a single action
 
I’m autistic and proud, but I am also deeply hurt by the children who died at Sandy Hook.  Therefore, on Saturday, December 22, 2012 at 9:30 pm Eastern Time, I am going to turn off my outdoor lights and burn three candles on my front porch:
 
One candle for the victims of Sandy Hook.
 
One candle for the unity of the autistic community.
 
One candle for hope.  Hope that love, not fear, will burn brightly and lead our nation into tomorrow.
 
 
Autistic or not, I invite you to join me.  Burn your three candles and post the photo of it on my Facebook page.
 
http://www.facebook.com/TheLauraNadine?v=wall
 
Let’s show the world we care for this tremendous loss.  Let’s show the world that the autistic community is strong, even in silence. Let’s change the world, one porch at a time.  
 
Laura
 
 
 
 

What I Wish I Knew as a Student with Asperger’s About Homework and Education

     Now that school is back in session, frustrations are rising in Aspie students and the people who care for them.  Many Aspie parents struggle with motivating an Aspie child who sees no purpose in doing school work on topics they do not care about.  This is tough, especially if the parent cannot see the purpose either.  After all, may parents are settled into a life that does not require the use of a wide array of the topics they covered in school, which becomes more obvious when a parent sits down to help their kid do homework but can’t remember how.
     As an Aspie that struggled through many late, long nights of homework, I feel a need to reach out to Aspie parents with things I wished I knew when I was in school.
 
 
1) Education in America was originally designed to prepare people for the workforce.
     All the way back to Colonial times, we can see a trend in education in America – Socialization.  For example, in 17th century New England, children were expected to learn reading, writing and arithmetic from the family at home.  Schools were established to practice these skills, understand the structure of society and to aid children in socialization.  For children that were to go on to more cerebral jobs such as politics or banking, they would go on to Latin schools or elite private high schools.  After the Revolutionary War, America understood the value of literacy as it was the use of written periodicals that helped America learn of the Boston Tea Party even before the news reached England.  By the late 1800‘s. most states and free public schools making America one of the most literate countries in the world.  Over time, schools evolved to provide a more well rounded education including lessons on culture and language.  Pre-Industrial America saw education as a way of becoming and maintaining as a world power.  More education equaled more wealth, setting us apart from the class warfare that had existed in England before America’s independence.  
     In the 1890’s through the 1930s, American tried to take on a new perspective.  John Dewey led America to the ideas of Progressive Education.  Dewey wanted schools to teach a wide array of topics to help children explore their potential.  He did not want schools to just provide a necessary set of skills for the workplace, but to create learned members of society who could produce social change and reform for the greater good.  However, school administrators were reluctant to the change forcing Dewey’s ideas to be isolated to only a few elite schools.  As the Industrial Era rose, schools began to shape their programs to set children on tracks based on their potential that is measured early on in the child’s school career.  Children suited for cerebral work were placed on a college bound track and children suited for the workforce as laborers were placed on a less academic track.
2) Education serves a different purpose today.
     Today, most American’s remain split on what schools should provide.  However, in a society that is much more technologically and internationally connected than those previous, education must be valued, even on topics we don’t think we will ever use.  Today, we often hear of news from across the globe minutes after it happens.  In one hour of television, we can take in a myriad of opinions and statements without any written proof that such information is even true.  The internet, now available to American’s of all economic levels, can spread information to millions before it is ever verified as true.  I remember, just a few years ago, an email circulated about margarine.  The email swore in avid detail that margarine was horrible for the human body.  What reason did they use to support this?  The email stated that margarine was only one molecule away from being plastic.  This email spread like wildfire, panicking families across the nation.  Most American’s bought into this fact as valid and enough to justify an opposition to margarine.  
     Now, I’m not here to argue whether or not margarine is good for you, but I can argue that margarine being one molecule away from plastic is not a valid reason.  Why?  Because of high school chemistry.  One molecule may not seem like a big difference, but in the chemical world, it is a huge difference.  For example, H2O is a compound better known as water.  It has two hydrogen molecules and one Oxygen molecule.  If I add just one more oxygen molecule, I get H2O2, a compound better known as hydrogen peroxide.  Would it make any sense to stop drinking water because it is one molecule away from being hydrogen peroxide?Even though I may not use chemistry in my daily work as a musician, learning chemistry in high school helped me make a more informed decision about my diet.
     In the “what about me” America of today, education today may not be framed by the school to meet everyone’s individual needs.  However, the more we learn on various topics, the better equipped we are to make sound, well founded decisions in many areas of our lives.
 
 
3) Lack of education historically has led to mass hysteria, slavery, and even the holocaust. 
     I can remember countless stories in history class, and even at home from my parents, where poor and even savage decisions were excused with “we just didn’t know any better.”  Women were burned at the stake for “witch craft” because the general population didn’t understand science.  Slavery was supported by misinterpreted passages from the bible and lack of scientific knowledge.  Hitler supported the holocaust stating that Jews were inferior to Arians and holding Arians back from reaching their potential.  All of this was accepted because information that could have disproved these misnomers were withheld from the people.  Need more examples of entire societies being misled by their lack on knowledge on a topic?   Try the McCarthy trials or the Jonestown suicide.  What about delicate topics like autism being cause by mercury or stem cell research?  Do those in favor or opposed to such topics really understand the science involved or do they just quote what they hear on television or from friends?
 
 
4) Homework is an exercise.
     Homework is an exercise for the brain and for the work ethic.  Let’s face it, most kids come home from school and yearn to spend their time on computer games or posting on Facebook.  We don’t even need to single kids out on this one.  How many of you adults are reading this at a time when you should be doing something else that needs to be done?  As a matter of fact, you may have gotten a hold of this article via a share on Facebook.  The point is that the ability to focus on topic we don’t like, or to maintain working when not being directly observed by an authority figure, are great assets.  We tend to look at homework as a negative aspect of childhood that takes away from play, but why?  If we change our perspective to see homework as a piece of growing up that is just as essential to childhood as play, then perhaps our kids would be more motivated to work efficiently.
     Aspie’s need to be shown that homework is a exercise in education, education is a necessary component for expanding the nations comprehension of truth and the acceptance of people who are born different or oppressed.  Integers and the periodic table could lead our future society to open minds and to understanding the truth about autism.
 
 
5) Laziness or lack of motivation is not autism, it’s an easy coping mechanism.
     I will admit that I was one of those Aspie’s that HATED homework.  I didn’t have someone give me the first 4 points I just made, so therefore I was seeing the world through my own tunnel.  I came up with a long list of reasons why I couldn’t do things.  In the world of autism, activities are either super easy, or ridiculously difficult.  We do not see the middle ground.  As we encounter activities that are too hard, we often use our Asperger’s as a way of not doing the work.  After all, if we exhaust mom and dad, then we don’t have to do it.  We Aspie’s are also magicians when it comes to constructing reasons why we shouldn’t have to do it, which, most of the time, sounds pretty good to parents.
     The bottom line?  DO NOT GIVE IN.  My grandmother used to tell me “I can’t means I won’t.”  We Aspie’s get so used to hearing about all the things we can’t do, that we often lose our self-esteem.  We need guidance through tasks we find difficult and we need to hear “can’t means won’t.”  Are there things we can’t do?  Yes, but this does not mean we should throw what we won’t do onto the pile of what we can’t do.
 
 
6) How do I tell the difference between can’t and won’t?
     As an Aspie, I often took my cues from observations of people close to me.  I so desperately wanted to blend into the crowd so kids would stop being cruel to me.  If my mom hated modern art, then I was to hate it too, after all that must be “normal.”  Therefore, if my mom were to hate homework or public schools, then my difficulties must be the schools fault and not because I don’t want to do the work.
     Mimicking is another coping strategy for Aspie kids who are unable to understand social cues and trends.  As a parent, you might not be able to see can’t in a sea of “won’ts” because our mimicking disguises it.  Yet, what if the parent were to change his or her perspective on homework?  What if parents approached homework as happily and positively as we approach a favorite treat?  As a parent, display a positive attitude towards homework and explain its purpose to the Aspie child as I did above.  See a purpose in each assignment, and then observe your Aspie.  Do some of the cleverly disguised “can’ts” disappear?  After a few months of the positive homework approach, the things your Aspie really can’t do should start to be distinguishable from what they won’t do.
 
 
7) Learn what autism really is.
     The most common educational impact I hear about from parents in their Aspie is “executive functioning skills.”  Did you know that executive function is a theory and that its exact role is hypothesized?  Did you know there are several models and that psychologists do not agree on one in particular?  Did you know that these cognitive functions are theorized to change during the various stages of human development?
     As a parent faced with an overwhelming amount of re-interpreted information on autism, it is easy for us to accept what seems like a reasonable cause for an action in an Aspie child that otherwise cannot be explained.  Before you accept such causes, be sure to gain satisfactory in-depth explanations from your psychologist.  Ask questions, and lots of them, until you have a clear understanding of the proposed problem.  Take time to learn the terminology associated with autism and perhaps even take a basic psychology course at a community college or online.  After all, your child will have autism forever, so it is best to learn what you are dealing with in as much detail as possible.  Many parents tell me they can’t understand the psychology or neurology behind autism.  Is it they can’t or they won’t?  After all, who wants to spend hours researching something they will never use in their personal life, right?
 
 
 
8) Don’t get the wrong idea.
 
     I am not pushing parents to force Aspie kids to do things they are just not capable of doing.  On the contrary, what I am asking parents to do is to carefully assess what their kids can’t do because they are probably more capable than you think.  Dr. Temple Grandin was never supposed to speak and is now a professor because her mom carefully assessed and fought for Dr. Grandin’s right to try.  Be the parent that helps us Aspie’s see our potential and how autism fuels us, not hinders us.  Then when we are faced with the things we truly cannot do, we will have the resources to work around them and the education to build our futures.

Not Knowing Emotion or Not Knowing How to Show?

Emotions are difficult to discuss because of their abstract nature.  The way Neurotypical (NT, from now on) people express their feelings to one another really have perplexed me for most of my life.  There seems to be this need inside the individual to have others understand how he or she feels, but a reluctance to “show” that emotion.  Yet somehow the outsider is supposed to read this conflict, decipher the emotion and react properly.  I cannot understand this, but I can tell you that I cannot operate my emotions in that fashion.
I believe that as an Aspie, that I do feel emotions. I see myself as a burn victim of emotions where emotion is so hot and fiery to me that it burns me leaving pain long after the incident.  As a result of that ongoing pain, my interior emotional states and my ability to read the emotional states of others are superseded by my pain.  For me, emotional states and expression must have a place to go and therefore elevate to a more cerebral status.  In other words, I express how I feel with the giving of gifts, analysis of words, presence needs from others and through my special interest.
If we take NT love, for example, between a parent and child, we see a desire in the NT parent to be loved by the NT child.  The NT child shows this by seeking approval from the parent.  You may argue that there is more to it than that, but really human love at its basic is a sort of approval seeking  and validation system (storge).  It is more automatic and linked with familiarity.  Most people want to know they are loved and that what they are feeling is “normal” or valid. When our children become teenagers and stop seeking the approval of their parents, the love between that child and his or her parent must evolve to a more unselfish love, which usually presents a new bond as the teenager enters young adulthood. There is no longer a familiarity to rely upon and for the relationship to survive, the love must evolve into an uncircumstantial love (agape).
With an Aspie child, that system of approval seeking is not there, mostly because we don’t care what others think.  Often times the NT parent misreads this lack of approval seeking in the Aspie child as an inability to return love leaving the NT parent to questions if the Aspie child feels love at all.  In reality, the Aspie child feels love for you but already in that advanced way that adult children hopefully evolve love their parents (agape).  This love is an unselfish love far removed from approval seeking and validation.  Aspie love is not there to fill anyone else’s needs for love; Aspie love is there as a free gift for no particular reason at all.
If NT parents can embrace this love of their Aspie child and release their need for validation, then a wonderful joy will result.  The NT parent will start to notice the unique ways the Aspie child relays love and both will begin to believe their love is always there.  As an Aspie myself and a “burn victim” of emotion, I can tell you that the process of sorting how I feel and how to express my feelings are a long string of laborious, life-long tasks.  There is no greater reward for that hard work than just knowing that my friends and family freely love me, no matter how poor I am at showing my emotion in conventional ways.
Laura Nadine
 

Discovering How I Feel

Imagine you are in your room.  It is quiet and comfortable.  As you slip off to sleep you are confident you are safe in your own bed, among your own things.  After a sound sleep, you awake to a pitch black room – a darkness so dark, not even this smallest bit of moonlight creeps in, so void of light that your ears ring.  You are frightened.  Your sudden awareness that you have awoken in an unfamiliar space is so invasive that you cannot decide to move or sit still.  Knowing the end of your pain is only in the discovery of its origin, you place your feet on the floor and stand.  You stretch your arms out and like the blind, you feel your way around the walls.  Your hands follow the lines of the furniture, a bed, a dresser, a chair – slowly painting a mental picture of what the space you are trapped in must look like in the light.  You feel around for a light switch, a door, a lamp – anything that might give you sight.  Your palms sweat.  Your mind wanders. But you eventually find the door.  The light bursts in and you discover that you fell asleep at home, and awoke in someone else’s bedroom.  How did you get there? Why did it come so sudden? These are questions you cannot answer, but the mere fact you are in such an intimate place as another persons bedroom, means you must find out how and why.
This process of waking up blind in another bedroom is how I experience emotions.  The emotions come suddenly, with no real definition.  I must feel around, tracing an image in my mind, hoping I can discover what it is.  Yet once I learn what the emotion is and the light comes bursting in, I still have to find out where it came from and why.  
People, like me, with autism must put tremendous effort into bonding emotion with understanding.  This is why it angers me when people with autism are accused of laking empathy. It is not that we do not feel empathetic, but rather that accessing that emotion in any real reaction time is excruciatingly difficult. This process is only eased by the patience of those around us, the extension of unconditional love and the freedom to release through our special interests.  So the next time you want to know how someone with autism feels about you, don’t ask them to show you with words and body language.  Rather, let them show you in their own way.
Today, ask someone with autism to take you on an adventure in their world.
Laura Nadine