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.

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.

A Monday, Changes – An excerpt from my next book “3 Pairs of Shoes”

First, the three shoes

Red shoes – the teacher.  Red Shoes are slick, and shiny, with slim, wax covered laces.  Her red shoes make a sharp heel sound when she walks down the hallways, followed by a clicking noise, as the tips of the laces tap the sides of her shoes.  When she walks, she means business.  She has much compassion for her students, but she must spread her compassion around to all her students equally.  Close to her students for only one year of their life, she must lead with love, but then let them go as she finds energy to usher in the next group.  She has done this for 20 years now.

Blue shoes – the parent.  Blue Shoes are well worn, way past their prime, and full of deep scratches.  Not having time for lacing, these shoes are open in the back, so she can slide her feet into them at a moments notice.  She loves both her kids equally, but sometimes one takes up more energy than the other, simply because one of her children walks the world in disability shoes.  Her energy is focused on both the short term school year, and the life long projection.  Everything falls down to her, eventually.

Black Shoes – the student with autism.  They are lace-ups with thick gum soles.  They are spotless, and laced neatly, since Black Shoes cannot stand for her shoes to get dirty.  Black Shoes is silent on the outside, but filled with poetry on the inside.  Her shoes may carry her to the places she visits, but her typing fingers take her far beyond the confines of the moment.  She just wants to be happy, healthy, and heard.

A Monday, Changes

Red Shoes

Today, Black Shoes was good in class.  She didn’t have her homework done, again, and said she forgot.  The school has provided each student with an agenda for writing down assignments, and I know I keep my webpage updated.  I simply do not understand why her mother cannot follow up at home.  I never see her mother at school and only met her during registration day.  She has failed to attend other school events where she might see how I do things at school.  I really want Black Shoes to succeed, and I do care for her, but I have 90 other kids I have to pay attention to as well.  Black Shoes does get some help from a special helper, but I think she is capable of much more if she would just focus more.

Today, her mother emailed me saying Black Shoes was having a hard time at school.  Apparently, mom is seeing all kinds of worrisome behavior at home.  We haven’t seen Black Shoes act out or show us any reason for concern.  Maybe mom is just overwhelmed.  All I know is Black Shoes could be doing better.  I am doing all I can.

Blue Shoes

This morning marks the 12th night in a row that Black Shoes screamed in her sleep.  The melatonin is not working.  I have also lost sleep, just making sure she is in bed and staying in bed.  Changes at school have her stressed.  The changes, overall, seem minor, but she just cannot grasp what is happening.  I have tried talking with her, but she just cannot give me any ideas on how to help her.  I have tried contacting the school, but they say she acts fine at school.  It makes me so angry to see a kid doing well, making all A’s, and then suddenly slip into depression and not turning in homework.  I’ve tried getting the teacher to sign the agenda, so I have an idea of what homework she has, and so I can help her, but the agenda is most often empty.  It’s in the IEP, but that seems to make no difference.  Often times the online posting of assignments it posted too late, or not specific enough for me to know what is happening.  Did Black Shoes do her work at school? Does she need her text book?  I check online every night, but I am still finding out weeks later that she has zeros.

On top of changes at school, Black Shoes has a project that is due.  She struggles so much with long term projects because of her troubles with executive functioning.  Despite my work schedule, I have had to find time to do a project with her too.  Why can’t these projects be made to only require of her what she can do alone?  Why can’t she get help at school from special education teachers?  I can’t remember the last time I could just sit with Black Shoes and play a game, or take her out for fun, we know how much I am told by professionals that family bonding time is important.  We are always working, when can we bond?  If things don’t get done, I am the one who is blamed, and so is Black Shoes.  I tried to attend some school functions, but my work schedule clashed with the open house the school had a few weeks ago.  Since I am paid by the hour, missing work means less pay.  Her needs are too expensive for me to not work.

I have tried communicating with leaders and teachers at school.  Some of the teachers respond, and I am grateful for that.  But I can’t write emails asking questions I don’t know to ask.  I can see Black Shoes needs help, but I have no idea what is wrong.  The meltdowns this week are many and I am simply exhausted.  I have another kid that needs my attention too.  But all I hear is, “You should have thought about that before having children.”  I didn’t plan for autism, no one does.  I am doing all I can.

Black Shoes

My stomach hurts again today.  I can’t eat anything but  a few bites of pizza pockets.  Sometimes I can eat my sandwich at lunch.  I do not know why I feel bad.  I like my teachers, but I do not understand what they want of me.  I am quiet in class, even when I feel like screaming, because when I screamed before, I got in trouble and had my favorite free time taken away from me.  I want to ask for help, but I do not know how, or what I really need help with.  I understand everything they teach me, I just can’t always prove it.  So, I get distracted, and I forget what the homework is.  I want to write it down, but I can’t write fast enough when the teacher is speaking.  I am not allowed to have my iPod at school to type my assignments on my calendar.  I am told I have something called an IEP that helps me.  No one asked me to be a part of the conversation.  I may not know what to ask for, but maybe if I hear what the teachers want, I can try to talk to them.  I want to be good at school.

My helper comes in to help me, and I think she is nice, but I am feeling too much pressure.  My brain doesn’t want to work at the speed everyone else wants me to.  I used to get time to cool down in a special room, but that was taken away.  Now I am asked to do more work.  Does no one see how much work it takes for me to sit here and be quiet instead of screaming because my stomach hurts, I am tired, I am confused, and I can’t ask for help?  Why can’t anyone here see my pain?  I have to learn to read when others are hurting, why can’t others read me when I am hurting?  They teach me to express emotion, and when I do I get in trouble because it wasn’t the right time, the right place, the right proportion, or making sense to them.  I just want to scream!  But I can’t, so I hide in quiet places and play games that calm me.  I am in pain all day.  I can’t take it anymore.

When I get home, I can see my mother is tired.  She wants to help me.  She sees I am in pain and tries to tell my school.  They do not see my pain so they think my mom is the problem.  I don’t have to tell my mom I am in pain, but I still can’t tell her what I need.  If I knew what I needed, I would be like the other kids, right?  It is kind of like swimming.  If you know how to swim when someone throws you in the water, then you will swim to the side.  If you don’t know how to swim, you will flap your arms, and kick your legs, and look as if you want to swim, but you still won’t know how to swim.  Having someone on the side screaming, “try harder” doesn’t help.  Someone asking, “what do you need” doesn’t help because you need to swim and you can’t.  It’s too late for a swimming lesson when you are trying to stop drowning.  Save me from the water, then we can learn to swim together.  Don’t just tell me to try harder.  Don’t ask me what I need while I am drowning.

I have feelings I do not understand.  I know they are sad feelings.  All I can do now is block the world out.  I have tried hard to live in their world, but no one is happy with me.  They want me to be like normal kids, but I am not a normal kid, no matter how much they teach me to be normal, and no matter how much I “act” normal.  I am me.  I am a not normal me, but a valid me.  I can be very good at being me, but I need help, not punishment.  Why can’t anyone hear me?  Why can’t anyone see me?  Why is it always my moms fault, or my fault, when I fall?  Can’t it be the systems fault?  Can’t it just be that this is the wrong path for me?  I am tired of hearing about all the other students and being fair.  No one tries to see the world from my eyes.  I have to go to classes and learn to see the world through normal eyes.  Why don’t the normal kids have to see things through my eyes?  Why are they called normal?  Can’t I just be me?  I am doing all I can.

3 Pairs of Shoes is scheduled for release in August of 2014.

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
 
 
 
 

Stuck

I recently posted on Facebook the feelings I am having lately.  Layers of emotions with multiple causes – such as the APA decision to eliminate Asperger’s from the DSM-V, the year of r, 2012, not ending the way I had hoped, changes in my work I cannot control and backlash from my inability to effectively  ask for what I need.

My rant began this way:


Want to know what living with autism can be like some days? Take a day in your life -remove 75% of your income, give yourself a headache, give yourself a stomach pain that gets worse when you are presented with food, surround yourself with people who speak broken English and be sure not to look at them when they speak so that body language is removed from your ability to interpret them. Now, in this setting, go to work, make a living, make friends, and if you have some extra time, remember to build your own self-confidence while having someone come in every half hour to remind you that you are a broken human being (this equals the news media bombardment).
 
Do this everyday until you break. How long would it take for you to give up?
 
Despite the gifts autism brings, don’t forget that those with autism you view as “mild” or “looking normal to you” operate under a barrage of sensory and social issues that run like a noisy machine in the background of everything we do. Before you lecture someone with autism about choices they make or how hard they appear to be working, you try and live life they way we do.
 
People have committed suicide from a condition called tinnitus; a condition which causes a constant ringing in the ears. If tinnitus was my only constant sensory discomfort, I would consider myself lucky.
 
Be careful who you lecture and who you judge. The surface is a cover, not a window.



This was followed by a day of processing as I tried to understand what is happening to me.  My days seem to shift from feelings of hope to feelings of inadequacy, with no in between.  The confusion has my stomach in knots, causing my diet to run in weird directions as I alternate from starving to hating the sight of food.  I hear vibrations, lights are bothersome, and my asthma is a mess.  Despite a lower income this year, all is going fairly well  – great friends, positive feedback from students, recorded a cd, and published a new book – so, I should be in a good mood, generally speaking.  
 
Then what is happening to me? 
 
I know these internal collisions of emotions are typical in people with autism.  Despite my experience and many hours of very helpful therapy, I still get stuck in this vortex – and still seem to never see it coming.  Since the general belief is that autistics don’t experience emotions, the training tends to focus on teaching us how to read other people’s emotions.  There is no effective therapy to date that helps autistics recognize, accept, and regulate their own emotions – or at least there is no effective one for me.
 
This is when a flood of questions enter my mind.  They are always the same questions:

 

  • Why do I feel I am pedaling hard but going no where?
  • Why do I believe that I am destine for greatness while at the same time feel too small to reach my dreams?
  • Why can’t I escape this feeling of being trapped?
  • What is wrong with me that I can’t have the job and home life I dream of?
 
Tomorrow I am going to ease my mind by taking a walk in a place that is familiar and full of positive memories.  I wish I had a streamlined process that would ease this dark side of autism.  There are days…..I just feel stuck.

 

 

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.

The APA cured me of Autism.

Initial Reaction
 
You heard me correctly.  I have been cured of autism, at least according to the APA and their fifth version of the Diagnostic and Statistical Manual (DSM-V).  This is because Asperger’s is no longer classified as an autism spectrum disorder.  In fact, Asperger’s doesn’t even appear in the DSM-V at all.  According to the author of the new analysis, Dr. Fred R. Volkmar (as quoted by the New York Times), “The proposed changes would put an end to the autism epidemic.”  “We would nip it in the bud — think of it that way.”  
 
Think of it that way?  Dr. Volkmar’s use of the words “think of it that way” disturb me more than his use of the word “epidemic,” which makes my skin crawl too.  In one insensitive and disjointed sentence he gives into the public hysteria that there ever was an autism epidemic, and then invites us to accept his efforts by thinking of it as a preventative measure to end the autism epidemic before it gets worse.  To me, it appears that the motive for removing Asperger’s and PDD-NOS from the manual is one of emotional whim, rather than fact derived from the collective research of Psychologists and other such professionals.  
 
Ending an “epidemic” is not sufficient grounds for dismissing the lives of one quarter of the ASD community.
History, Very Briefly
 
When I was in my youth, I was fragmented and lost.  I struggled with social skills, keeping up with homework and structuring my day to day living.  I was bright, testing high on intelligence tests, but I couldn’t grow as expected. I suffered from night terrors, couldn’t sleep away from home, struggled to make and keep friends, and couldn’t handle changes in my routine.  My thoughts were disorganized, stuttering “whole phrases,” as my mom would say.  I did not exhibit classic autism traits, but I was certainly not able to function in society.
 
By the time I reached my late teens, I was in a steep depression, isolated, withdrawn, and laden with passive suicidal thoughts, wondering every day, “Would the world have been better if I were never born?”  I lived in the shadows of human acceptance.
 
My favorite book, at the time, was I Am the Cheese by Robert Cormier. The book was the story of a young boy lost between reality and his perception of reality as he comes to terms with the loss of his parents.  The character relates himself to the cheese in the childhood song The Farmer in the Dell.  Just like the cheese, the boy was left to stand alone.  This story connected to me like no other.  I felt I was little, insignificant and unwanted.  
 
Like the cheese, I stood alone.
 
Diagnosis, Asperger’s
 
I was in my mid twenties when the diagnosis of Asperger’s was set before me.  I quickly entered therapy, went back to college and soon, I emerged from the shadows.  In only two years, following my diagnosis, I went from being the cheese to being a proud, strong me.  
 
Before the diagnosis I,
  1. Had a GPA of 1.9
  2. Had few friends.
  3. Endured multiple failed marriages and relationships
  4. Suffered from depression
  5. Weighed an unhealthy 95 pounds (I am 5 foot 2)
  6. Was a high school drop-out
  7. Thought I was worthless, stupid and deserved to be bullied
  8. Suffered from night terrors at least 2 times a week
 
After the diagnosis I,
  1. Have a GPA of 3.4
  2. Have made many close friends, have best friends and have built a network of hundreds
  3. Enjoy a fulfilling relationship
  4. Smile everyday as I am free of depression
  5. Weigh a healthy 120 pounds, exercise daily and am very active
  6. Entered Agnes Scott College and earned 65 credit hours of my degree, only stopping because I ran out of funds.
  7. Believe I am valuable, intelligent and strong
  8. No longer have night terrors
 
The diagnosis was not just about social skills, it was about functioning.  Inundated with broken thought patters, sensory overload, and wrought with frustration over constant miscommunication, I was unable to function in any environment without constant intervention.  My mind created for me scenarios that were far worse than what was actually true.  I was not broken, I was lost.  A diagnosis of Asperger’s led me to others with similar experiences and placed me on a path.  “A path” is the key phrase here, for the way the lost become found, is to find a path out of obscurity.
 
The Un-diagnosis
 
The move to eliminate Asperger’s and PDD-NOS, replacing it with the vague, pragmatic Social Communication Disorder (SCD) is reckless, unnecessary and disillusioned. 
 
IEP’s all over the world will have to be rewritten following new diagnosis, which may exclude children from special education altogether.
 
Aspie’s will have to redefine their progress recognizing only those which apply to their communication, irrelevant of their emotional needs.  Emotional delays will also have to be redefined as another diagnosis, separate from SCD.
 
Parents will have to seek resources elsewhere which, at the moment, do not exist.  Why?  Because we have received our interventions from institutions that worked with autism.  Without that diagnosis, we must now be un-invited and sent out to find help with speech pathologists and other professionals who work with communication delays.  
 
Without the autism component, I will no longer get help with sensory issues, emotions, perception, processing or anxiety.  Those of us already diagnosed with Asperger’s will have to navigate uncharted waters while therapists redefine intervention parameters to be used.  
Speech Pathologists, unable to ignore Autism aspects unaddressed in the new SCD diagnosis, will have to be trained in areas beyond their field so as to encompass the non-speech aspects of what was formerly known as Asperger’s.  I won’t be surprised if we hear professionals use the term “formerly known as Asperger’s” for the next twenty years!  There will be a learning curve and time will be consumed as they adjust.
Laws and rules in place to help schools, hospitals, and Social Workers who deal with Aspergers, will have to be modified or re-written to include the new SCD.  It took the better part of twenty years to get Asperger’s addressed in these places so we can all imagine how long it will be for SCD.
Thousands of children, who would otherwise flourish with the well-established and funded interventions of ASD, will fall into a massive chasm between nuerotypical and autistic.  “Cured” of autism, but still not nuerotypical, they will be lost.
I will, along with thousands of my Aspie friends, will be un-diagnosed.  Many of us may lose medical benefits, SSDI and valuable research gained by the remaining ASD community.
Girls with Asperger’s will suffer because the SCD diagnosis requires signs in early childhood.  Girls do not always show delays in early childhood or they can be overlooked, as is often the case.
Autism itself will suffer too.  So many of us with Asperger’s have been vital to helping professionals understand classic autism.  We can articulate that which our non-verbal friends may struggle to say, leading professionals to innovative interventions.  Why were computers put in front of non-verbal autistics?  In huge part, it was because people with Asperger’s made the connection leading therapists to offer it to those who couldn’t ask for it. 
 
 
Protest – Who Needs Words, Anyway?
 
I will protest these changes, and I invite all of you who feel the same as me, to join me.
 
I will order a shirt to wear, showing I am one of many who will be rejected under the DSM-V.  
For Asperger’s – http://www.cafepress.com/cp/customize/product2.aspx?number=613447904&utm_medium=cp_social&utm_source=addthis&utm_campaign=CreateAndBuyPDP#.Txm3rvInjz4.google 
 
 
For PDD-NOS – http://www.cafepress.com/cp/customize/product2.aspx?number=613449599&utm_medium=cp_social&utm_source=addthis&utm_campaign=CreateAndBuyPDP#.Txm4joriJEs.google
I will wear my t-shirt it in a silent protest I would like to happen Saturday, January 29. We will walk our own trail of tears.
 
I will also wear this shirt on every outing during Autism Awareness Month in April.
 
I will stand in opposition by refusing to be called anything but an individual with Asperger’s Syndrome.
 
 
 
I’ve Seen Square One, I Left It For a Reason
 
Without Asperger’s, I will no longer have the support and resources, which I credit for my growth from lost to found, from beaten to proud, from silent to outspoken.
 
Without Asperger’s, I am the cheese and once again…
 
I will stand alone.