Traveling with Autism is getting harder, not easier. Why?

Traveling with Autism is getting harder, not easier. Why?

Dear Phoenix,

It is not uncommon to see public spaces with accommodations of various types.  Restaurants have high chairs for little ones who can’t reach the tables quite yet.  Shopping malls have strollers for children and wheelchairs for elderly who find it difficult to walk the entire mall.  Even in states with public smoking restrictions, many of these places still have smoking areas.  The Atlanta airport has smoking lounges.

Yet when it comes to disability accommodations are becoming harder to get than they were 5 years ago.  How did that happen?

Today, I am at home in deep compression, following travel.  It shouldn’t have to happen this way.  I had to abort a work day too. Not good when you need to pay bills.

Airports and airplanes are overstimulating, even if you love to travel as I do.  True, the tight spaces and noises in the airport itself are part of the issue, but those are just the obvious ones.

  1. People on Domestic US flights are, as a whole, unhappy travelers.  People get upset about everything from security backups, changing rules, long lines to board, and limited overhead space for luggage.  This means most people are vibrating with negative energy, and putting off stress hormone odors. As an Autistic person, I can smell every one of them as they step on the plane, and feel their negativity make my spine sting.  It makes my teeth hurt, and my skin sensitive.  I am in pain, but to everyone around me I just appear quiet and disciplined.
  2. Planes are noisy.  Engines aren’t the only things that make sensory overloading noises.  Shoes walking on the asiles, luggage being loaded, the fans to circulate air, jewlery clanking, people eating food, opening plastic bags, drinking, coughing, sneezing, mobile phones ringing, and that awful sound of the seat belts latching, just to name a few.
  3. Planes smell like portable toilets to me.  When I board, I can smell the previous passengers.  I smell their perfumes, their stress hormones, food they ate, foot odor, and breath circulating through the airplanes air system.  If I am made to stit near the washroom on the plane, I can smell if it has been used at all that day, and the chemical agent used to clean it.  When they refuel the plane, my mouth starts to taste like I am eating copper.
  4. People refuse to follow simple rules about where to put their baggage.  Sorry, but that bothers me.  People cram jackets and shopping bags in the overheads taking up precious space.  They also jam things violently when something blocks their suitcase, which is often my violin case.  I had to purchase a tougher case to protect it.  I am bothered even more by people taking exit row seats that are not really capable of helping in an emergency.  On a recent flight, the attendant allowed a woman with a fresh knee injury (they gave her a bag of ice for it) to sit on the exit row while denying a 6 ft 8 inch man the seat. This woman had to hop down the aisle holding onto the seats.  She could not walk without help.

With all of this going on, my nose and mouth become numb, and my speech retreats.  People I travel with often complain that I am too quiet to be heard even though I think I am speaking loudly.  Sometimes, I just can’t talk at all.  So you can imagine how hard it is when I have to explain to 4 different people between the counter and the gate why I get priority boarding.

On a recent trip with Delta, I had to take 3 flights to get to my destination.  On one flight, I was flying with my son from Buffalo to Atlanta and back.  We both have an official on-paper diagnosis, which I carry with me.

When I booked my flight online, I filled out the form for disability assistance, requesting priority boarding and assistance through security for my son.  He has only traveled twice and still needs a little support with the confusion of security. (Last time he left his suit case unattended, and this time he forgot to take off his shoes).  Delta then called and left a message.  The message was impossible for me to understand.  Not one word.  The only reason I knew it was Delta that called was because they followed up with an email to say they couldn’t reach me but left a message.  There was no option to text, email, or chat via typing.  Only a phone call.  So, I decided to do it the old fashioned way and visit the counter at the airport.

At the Delta counter in Buffalo, I stated as I always had, “My son and I are on the Autism Spectrum.  We would like assistance with this flight.”  When she asked what kind of assistance, I answered, “we request priority boarding and assistance for my son through security.”   She then asked me a bunch a questions I was not used to hearing, and even dismissed assistance through security because I was with him.

We stood in the regular security line and I scrambled to help my son.  He gets panicked in security, which draws attention to him.  Once he takes off his belt, his pants will no longer stay on unless he holds them, which also troubles the TSA.  He ended up getting a pat down.

Once through security, we were stopped at nearly every gate and told we could only get priority boarding if we were in a wheelchair.  I had to show on my ticket where it said “assistance requested”. and explain why.  On our return flight home from Atlanta, the hub of Delta where I KNOW they have received plenty of advice by their disability advisory board, I was told I would not be allowed priority boarding based on disability because my paperwork was more than a year old.  A diagnosis must be written within a year in order to be, and I quote, “compliant with the law.”  She finished by saying, “We can’t just give everyone priority boarding.”

It took a very stressful conversation, but she finally allowed us the status.  I was told no one was available to assist Jacob with security.  So, I approached the disability assistance line and the TSA allowed us in that line.  This time I got the pat down, with no warning they were going to touch me.

We weren’t questioned at the gate this time, but they did allow first class passengers to shove their way in front of us needing assistance during the pre-boarding process, totally destroying the whole point of getting on the plane before the masses.

I didn’t meltdown, so no one will be able to post a picture of them helping me calm down.  Instead I held it together, appearing only timid or tired to others.  What they don’t know is that the day after travel is when I get attacked by you, Phoenix.  Montezuma takes his revenge on my system, my ears ring, my teeth hurt, my nose remains numb, and I get sleepy and disconnected.  Today, instead of cleaning my apartment and working as I once was able to do after travel, I am wrapped tightly in covers trying to ease the nerve pain.  I even had to leave an appointment today because I was starting to melt down in public.  My vision pulsates, and everything looks like there are transparent creatures running through my world.  I get jumpy, confused, and sometimes forget where I am.

Thankfully, Lyft can be called using an app, so I was able to avoid the long, noisy bus ride home.  Total meltdown avoided.  Ten more minutes, and I would have been stuck in public places for a few hours.

Why is this still an issue?  Is it really so bad that someone with Autism, even if you can’t see it, gets to board a plane first?  You think that isn’t fair?  I pre-pay to check my bag to make my trip less stressful, and then watch dozens of people get free checked bags when there isn’t enough room on the plane for bags, mostly due to people carrying on more than allowed and stowing it where they are not supposed to.  That means I pay for what others get for free, yet I don’t expect a free checked bag.  Besides, you chose what to pack for a trip.  I did not chose to have Autism.

Airline travel is not great for anyone, but people with Autism feel that flight for days after.  If I could get priority boarding stamped on my ticket at the counter, and board unquestioned to my destination, like I once could (or still do with Southwest), I can actually function the next day.  That few minutes of quiet settling in, placing on my headphones, and adjusting to the smells gradually, can make or break a trip.  5 minutes.  Can’t everyone spare 5 minutes?

I have another flight with my son on Delta to San Diego in September to speak at the Love and Autism Conference.  I do hope they can redeem themselves.  Otherwise they are ignoring the work of the 15 advisors working hard for people with disabilities.

Hopefully better things to write tomorrow, Phoenix.

Love,

Laura (snamuh)

Enough About Salad

Enough About Salad

Dear Phoenix,

There seems to be this odd competitiveness among humans to be both better and worse than the other.  The self-help sections of bookstores have grown exponentially in the past decade as Who Moved My Cheese disciples sell their success strategies to otherwise mediocre people.  Self-diagnosing tests have created a Psychology section of books to what was traditionally an obscure topic, all for the sake of making people feel superhuman, leaving mediocrity behind and elevating themselves to fame or fortune.

 

Until you get them in a room with reality tv and a box of lowfat snacks.  Then it is all about whose pain is worse, who had the biggest heartache, who must work hardest to achieve their goals.  It is one of those pivot points inside humans I just do not understand.  In the disability world, this phenomenon is amplified as parents and professionals try to scale the autistic experience from worst/hardest to best/easiest.

 

I know you’re mad at me now, but keep reading.

 

I am not oblivious to the fact that some of us on the spectrum require more day to day interventions and supports than others.  I have worked with families that had autistic children who still required assistance toileting, bathing, and eating well into adulthood.  One can’t observe this truth and not also accept that the total care of another being requires extreme patience, energy, and often depletes the freedom of the caretaker.  But is that because of Autism?

 

I know I promised not to mention it, but it is our salad problem all over again.  No matter how dependent on others a person with Autism may be, they are still a person – we are all salad.  However, we still live in a society deeply influenced by Eugenics.  Up until the late 1970’s US states had sterilization laws in regards to people with disabilities, but no quality of life laws.  Our society as a whole has failed to recognize the person and has ignored the real solutions, placing quality of care squarely onto the shoulders of their families.  To avoid institutionalizing their loved ones, and seeing them demonized, sterilized, and ignored, families set out on their own to create a life worth living.  

So is this autism’s fault?  No.  It’s our fault.  Willful ignorance and lack of supports for caretaking families add an unnecessary clap chain to their ankles.  Families exchange their own freedom and sometimes even sanity because they simply cannot find adequate relief.  Many do so while also being ostracized.  It is as if society expects a parent who by happenstance gives birth to a child with a disability must now give up every sense of her own individuality.  What does she have left to do other than complain?  I can see how this way of life can force some parents to feel blame towards the child.

Improve respite care, pass quality of life laws and then fund those programs no matter what political regime is in office,  and the need to compare battle wounds diminishes.  Parents need help, but they also need society to stop blaming parents for everything.  We cannot frame a community around only the momentarily and narrowly defined concepts of desirable and successful.  Our treatment of our most vulnerable members define us as a society.  We value heroism and glory, but fail to recognize compassion.  Somehow we have confused compassion with complacency, removing the core understanding of how we are to love one another.  

I wonder, had Stephen Hawking not been able to afford to attend university and therefore had not have a chance to prove his mind before ALS set in, would he still be seen as a valued member of society?  What if the wheelchair came before public achievement?  Would society believe it was really him talking or would it be assumed he was being prompted?  Is what we show Stephen Hawking true compassion for his life with ALS, or is it hinged only on our focus of the tragedy that disguised a great mind because we feel we are missing something by not getting to have a verbal, traditional conversation with him?

In my case, people knew me before we could label you, Phoenix, as Autism.  Many people doubt my diagnosis because they see me happy, conversing, and acting with competence.  They believe non-speaking people are incompetent because the non-speaking cannot fulfill the listeners need to converse traditionally.  Whole people are ignored that cannot publish and lecture before they go silent.

This brings me to another point – island of genius, prodigy, savant.  More than average people, people with Autism are held to a higher achievement standard.  Despite widespread mediocrity in the neurotypical population, people with autism are not seen as a contributing member of society unless we display a savant like ability, particularly in math or technology.  This leads to most people on the spectrum having to prove themselves, again and again.

 

Let me backup a moment and explain that mediocrity is not bad.  Not everyone is a genius.  Not everyone is a global mover.  Some people are content with and excel at being ordinary.  Most people are ordinary and work in their own small spheres to create micro communities inside our larger communities.  It is what gives people a sense of home and belonging.  Without ordinary people, there would be no constants in life, nothing to return home for.

 

When a child is born with a disability, parents and professionals worry if the child will even meet the realm of mediocrity.  Concerns over reaching developmental goals in the great stride towards single, isolated independence dominate the child’s upbringing and education.  Goal posts are often set too low, or too high, as they are often subject to a very restrictive timeline.  The child is then measured and observed and when development does not stick to the schedule with an exceptionally tight margin of error, the child is proded and forced.  

 

To further complicate the process, developmental and educational models often blur the lines between ability and discipline.  A child who does not progress, but by all measures should be progressing, it is assumed the child is deficient in discipline.  The barrage of psychoanalytical therapies then begins as those on the doorstep of autism try to make sense of why this child refuses to bite the apple.

 

To the best of my knowledge to date, there is no comprehensive therapeutic or educational model in autism which allows the child to give feedback on his or her own progress.  No one asks us what we feel, and when they do they mistake our absence of answers as an inability to understand.  Just because I am still searching for the proper way to express my feelings in losing my mentor over 13 years ago, does not mean I lack the understanding of how I feel.  Imagine that for weeks you have felt ill and all of your own remedies seem to fail.  You know you are ill because you feel it, but you have no idea what kind of illness you have.  You spend some time researching and discover that your neighbour had the flu a few weeks ago, and so you assume you have the flu.  You can only assume without the input of a medical professional.  One evening you are laying in bed and feel so ill that you open WebMD and start to think you have cancer.  The emotions invoked by your fatigue and multi week sickness inflate your worries.  This is normal, but you give in and head to the doctor.

 

At your doctor visit, you talk with the nurse who asks you the vague question, “what brings you in today?”  Thus begins the process of finding words to explain that you feel ill, why you feel ill, and how it negatively effects your day to day operations.  You may even explain that you thought you had the flu, but now you are worried it is worse.  The nurse and doctor ask questions, but it is their tests and measurements that give the most comprehensive picture.  You are told you are allergic to a food you enjoy regularly, and that is why you feel ill.

 

Does being unaware of your allergy mean you should no longer be allowed to determine if you are ill and need to go to a doctor?  Did not knowing the cause of your illness make you feel less ill?  Did you lose the ability to understand illness, medicine or doctors?  No, but if you said you have autism, people would assume all of these things for you.

 

Autistics like me know more than we can communicate.  Autism obstructs our ability to translate, and does not diminish our ability to comprehend.  Often when we are unable to show our intellect, our freedoms are removed and decisions are made for us, meaning we never get to exercise our growth on our own timeline. This makes independence an ever obstructed goal post.

That is unless we show we are some sort of prodigy, genius, or savant.  Then, our opinions are heard, at least in the area of our perceived genius.

Why can’t someone with Autism be allowed to be wrong?  Can we not have beliefs different from the therapeutic model?  I ditched social skills training methods a few years ago not because I do not want to learn social skills, but because I felt what was taught was useless and diminished my strengths.  I wasn’t being obstinate, nor do I lack the ability to learn social skills systematically.  I just think most methods of teaching social skills suck and want better ways.

Oh, Phoenix, I know you are on this ride with me, but I also know you don’t see all that I see.  I must protect you.

I’ll write more tomorrow.  I know you will be listening.

-Laura (Snamuh)

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.

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.

Struggling to Understand an Over-Politicized Nation

Struggling to Understand an Over-Politicized Nation

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My grandfather holding the flag at the very first Flag Day. An Italian immigrant, he loved being an American.

I do not usually talk about politics, but I find myself in a precarious position today. Many issues we face as humans have somehow become political, when they are ethical, personal, or simply in regard to human survival. I believe these issues are; the arts, the environment, education, and health. We as a society seem to have lost the ability to discuss these particular topics, without a party slogan, and without thinking that there are only two sides to every issue – Conservative or Liberal, Republican or Democrat. My feelings on human issues that have been politicized deepened today when an article dropped in my news box about the new open carry law in Georgia.  Though I am a pacifist, I have remained respectful that others do not see the world the same way I do, understanding that guns to some are essential to their way of life. I do not understand why the freedom to own was not enough and that we must have the freedom to be battle-ready at all times, in any place.  I feel this new law leaves the political arena, and imposes itself on the health and well-being of others (health being one of the issues I feel is a human issue).  My fear of co-existing in a state I have called home for 37 years has increased exponentially with this law, filling me with anxiety.  After a 10 year hiatus, I even experienced a night terror this week.

This feeling about the new gun law poked at my thoughts and feelings on the other issues that have been politicized.  Issues that have been tortured in the political arena, to the point that the issue itself is obscured by a party stance. It made me think about how politicization has perhaps suffocated the arts (especially in education), turned schools into testing labs, allowed us to blatantly pollute our world, and further restricted healthcare to poor Americans just to express ones opposition of the Affordable Healthcare Act. While many people are stepping onto the shores of anarchy, I ask: What is it you wish to accomplish? Are we really fighting to defend a way of life that allows all citizens to be created equal? Are we making history of which future generations will be proud?  Are we loving our neighbor?

It is in this moment that my autism stands like a stark, cold edifice in the center of my mind.  I get overrun with feelings that conflict with my logic – How is it I can love humanity so deeply while simultaneously being highly annoyed by people?  I cannot understand why society spends millions upon millions of dollars searching for a way to cure me, labeling me as lacking empathy, while they who cast this upon the ASD population are drowning in their own opposition to anything that does not benefit only them.  Is that not the very definition of apathy?

The world whispers to me in beautiful waves of sound.  The music of the human soul, and the music of the earth’s soul in harmonious counterpoint, express an amazing love for one another.  But people are growing increasingly deaf to this musical dance in exchange for the cacophony of human discord.  And to what end?  What we create here on earth we cannot take with us beyond the grave, so why only serve ourselves?  Besides, the only thing we can really do for ourselves is create memories of us in the minds of others.  We cannot control our death.  All else we do is for others – for humans, for animals, for trees, all life in and beyond our immediate scope – doing for them by way of generosity, love, and the types of innovation that leave a better world than was left by our ancestors. Perhaps I am being over analytical, and I do realize that my honesty here has made me a target for a lashing by those who oppose what I value.  I suppose I will have to just accept that.

I will keep my autism and carry it with me forever, as I would rather live this life misunderstood and tyrannized, than to waste my life pursuing an illusory need to be justified.  I will sing.  I will dance.  I will love others.  I just won’t be so quiet about it anymore.

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.