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.

 

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.

 

Holiday Donating in a Way that REALLY Helps

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

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

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

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

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

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

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

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

Laura

The Developmental Corset of Therapy, and How to Break It

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

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

Categorization of the Unknown

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

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

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

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

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

The Blame Game that Follows the “E – Word”

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

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

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

It’s Nice to be Recognized

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

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

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

Break Off the Corset

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

– LN

The Autism Industry and the Glare of the Blue Light

The Background, and My Own Struggle

I read an article in USA Today last May that touched me very deeply.  AP Medical Writer Lindsey Tanner reported that 1 in 3 Autistic young adults “…have no paid job experience, college or technical school nearly seven years after high school graduation.” [1]  I wish I could say I was shocked, but as a person with autism, I knew this statistic to be true, and was certainly echoed in my own life.

At 36 years of age, I have an education history that includes dropping out of high school as a Sophomore, and dropping out of college – twice.  I am not skilled at anything domestic, which was pushed on young women in my region.  I was also unable to obtain basic work skills often needed for wage work, or obtain the necessary social skills to “sell myself,” a skill that could make my small business much more profitable.  On paper, I am unable to compete with  my NT (neurotypical) peers, though I certainly have tried.

Off the paper trail, I am rather accomplished; I can play 7 instruments, 3 on a professional/competitive level, I have self-published two books doing everything from layout, to editing, to cover design.  I have composed dozens of songs, listed a single on iTunes, performed on national television, spoken to thousands of people about autism, and taught hundreds of children to play the violin and viola.  In my filmmaking endeavors, I have created numerous films, doing literally everything myself. And I am only talking about the last 2 years.

My yearly salary for 2013 – $10,000.  Even in the years of a “good economy” I have never earned over $15,000 in one year.  I do not have a savings, 401K, insurance, or an incorporated business that holds cash.  My parents pay my mortgage, and I do not receive disability pay, as I live in that wedge between government definitions of abled and disabled.  I am also a single mother, with my children residing with me full time.

Autism Industry

There are so many non-profits out there raising money for autism, that I cannot begin to list them all.  Many of these organizations have humble roots, beginning with a single family who wanted to do something good for autism.  As these non-profits grew, they went from a family or mission like structure, where a few people take on multiple responsibilities, to a corporate structure with multiple layers of middle management, and a high paid CEO.  They adapt the idea that in order to bring in money from high dollar individuals, they must have their own high paid CEO playing the “prestigious wealthy” guy.

All of this structure costs an organization money, scraping from the top as the funds pass down through the corporation, and leaving a fractional amount to the intended beneficiary – the person with autism.

Don’t agree?  At the risk of ridicule, let’s consider this.  An Autism non-profit collects money, often in the millions of dollars.  They pay their own employees, who work to send the money to other foundations.  Each one of those foundations have their own staff to pay, and overhead costs to cover.  What is left is sent to pay for the services or research those foundations support.  As the money is handed to hospitals, labs, or services for an autistic individuals, the remaining money pays the salaries of the people who provide those services.

Rarely, is money handed to an autistic individual to cover food, clothing, housing, a college education, or start a business.  In fact, I do not personally know an autistic person who receives money from foundations for the things I have just listed.  I am not referring to subsidized group housing or canned goods either.  I am talking about housing and food that NT people would find for themselves.

Let me be more specific (and ultimately get myself in more trouble.)  Autism Speaks reported earning $60 million from fundraising in 2011. [2]  Researchers believe that the autism prevalence rates can be anywhere from 1 in 88, to 1 in 50.  This means, at the least, there are 3.5 million people in the United States with autism.  If I were to take the donations to Autism Speaks, and put it directly in the hands of every autistic person, every autistic person in America would be a millionaire.  That is taking money from one single organization, raised in one single year, in a bad economic climate.

What about the good they do?  What about a cure?

I am not going to stand on a precipice, and call out judgment.  My goal here today is simply to point out that many, many, many people are making a very comfortable living off of autism, while most of the adults with autism live well below the poverty line.

People and families with autism are motivated on their own, to act in their own self-interest.  Some seek a cure, some seek treatment, but many of us just need a good education, a supportive community, and an opportunity to work.  Most of us are far more capable of being well paid, productive citizens, and a huge portion of us have incredible, native talents.

Yet many of us are paid low wages to file papers and clean floors.  Most of us work unpaid for our expertise on autism when invited by these mega-million non-profits to speak, teach, or answer parents questions about autism, while the NT experts are paid hundreds to present research at these same events.

There is an imbalance here that must be addressed.

Many autism organizations make money off of a very specific set of limitations perceived in autistic people, many which are illusionary.  We group traits into medically acceptable terms: milestones and talents into “special interests,”  exceptional work ethic and job focus into “lack of interest in peers,” and the verbal communication we muster out as “inappropriate comments or monologuing.”  How many of these mega-million non-profits for autism employee autistic individuals in salaried positions?  How many mega-million non-profits for autism have an autistic CEO?  To say that none of us are qualified to hold the position of CEO is a myth, just as it is a myth when people say there are no qualified women or people of color to be CEOs.

What Can I Do About It?

Simple.  Here are a few ideas:

1) Give to small organizations in your local community that are doing hands on work for autism.  Such organizations in my area are Shenanigans [3], Spectrum [4], and Georgia Autism Conferences [5] (who have been tremendously generous to me and are a huge part of my growth).

2) Get involved with organizations that are OPERATED by people with autism, or serve to empower independent lives in people with autism.  Autism Self-Advocacy Network [6] is such a place, and even provides a list of projects that you can help.

3) Be patrons of businesses that have autistic employees.  Being involved in local advocacy groups will often connect you with places that employee autistic people.  Also, don’t be afraid to ask.

4) Help build Autistic owned businesses.  I am autistic, and I own and operate my own business.  However, my poor executive functioning and lack of business social skills make it difficult for me to do secretarial work, apply for grants, or network socially.  Help people like me by funding projects, offering free or low-cost services to get us started, or offer grants to us to start on the right foot.  Such donations will be far more rewarding and satisfying because you get to see your efforts grow first hand.

5) Develop full college scholarships for people with autism.  Often times, we do not qualify for merit based scholarships, especially if we are coming from a school system that was unable to properly support us in grade school.  A college education ensures that we will be working in an area where we excel.  My only reason for dropping out of college is lack of funds.  I am still being harassed by collection companies for my federal student loans which I cannot afford to repay, since I divorced and never finished my degree.  I paid for all my college costs, I received no scholarships, and now my credit is ruined.

6) Parents, don’t hide your child’s autism under a bushel.  Let it Shine!  Believing in your autistic child and being proud of us, helps us build the necessary self-esteem to deal with the bullies of life.  For me, saying to people, “my son is autistic” is just like saying he is a boy, or he has red hair.  If you’re not embarrassed,  the child grows stronger, and the world learns acceptance.

There are plenty more things you can do, you just have to look past the glare of the blue light to see those of us in the shadows.  Get local, touch autism in person, and you will see an unparalleled beauty of gratitude.

References

[1] http://usatoday30.usatoday.com/news/health/story/2012-05-14/autistic-young-adults-jobs/54954292/1

[2] http://www.autismspeaks.org/sites/default/files/documents/as_annual_report_2011_web_12-13-12_final_03.pdf

[3] http://www.shenanigansimprov.com/

[4] http://www.atl-spectrum.com/

[5] http://www.georgiaautismconferences.com/2012/

[6] http://autisticadvocacy.org/projects/

I Am Frozen

As difficult as it is for me to wrote about these things, I feel it is important to share my limitations, hoping that it will help others who cannot put to words these feelings.

Today, I am frozen.  A well intentioned thought process has overwhelmed me and now I am physically, and mentally frozen on the set of tasks I must complete.  I do not know why this happens, and I still do not fully know what to do to get back on track.  It’s a very frustrating place to be.

The Background  

I have always been disorganized.  There is something about filing, prioritizing, sorting, labeling, and following up that I just can’t seem to fully grasp.  After years of struggle, I stumbled upon a method called The Action Method.  I spent a little time on their website at behance.com getting an overview of the method, and playing with the free online software.  For the first time, it felt like achieving some organizational skills was possible.  So, I jumped over to Amazon and bought their book called Making Things Happen.


Reading the Book

I have never had help with dyslexia, probably because I didn’t even know I had it until my late twenties.  All I knew was that reading was a skill I was painfully slow in acquiring, and was almost impossible to maintain.  No one ever asked me if the words were moving around the page or vibrating or flipping around, I was just told to try harder.  Most of my interventions are ones I learned about on my own – colored transparencies to cover up the page, low lumen LED lighting so the light is not too bright or noisy, and a guide to isolate paragraphs.  Some days, however, I just cannot read, even using all my little tricks.

Last night, my reading was good.  I was able to read to page 58, of course skipping over all the examples given by the author.  (My autism seems to like bullet points better than stories.)  Words were clear, staying still, and making sense in my head when I read them.  Unfortunately, duty called and I had to go to work.  Reluctantly, I put the book down.

Today, I tried to pick up from where I left off.  Reading was off the charts with a battery of vibrations and movements, causing my eyes to quickly fatigue.  Motivated by yesterday’s good read, I really wanted to learn this system and get my business organized.  I tried with every possible ounce of effort to continue reading, but I just couldn’t.  Frustrated, I threw the book down after covering only 3 pages in an hour.

Try Something, Anything

I couldn’t read anymore, but maybe I could just apply what I had learned so far.  I understood there were three categories to organize everything into – Action, Reference, and Backburner.  I also understood that I needed to gather all my papers, notes, correspondences, and files in order to begin sorting everything into the three categories.  The method is clear, and concise as well as simple.  My mind easily wrapped around the concepts presented in the book.  It was clear to me that I understood, theoretically, how it all worked.
 
People often rate intellectual ability on action.  If a person behaves in a manner that seem intelligent, or if a person can easily complete tasks that are socially interpreted as intelligent tasks, then people assume that person has a high IQ.  Similarly, people often assume that the opposite is true – odd behavior or inability to easily complete tasks must mean a low IQ.  Both assumptions are wrong.  The ongoing frustration I find in autism is the breakdown between my quick intellectual processing and the translation of that processing into a tangible task.  I understand what I must do, but I am paralyzed by the process of projecting my intellectual world onto my physical world, efficiently and in tact.
 

11:01 am – Frozen

I am sitting at the table, absolutely frozen.  I cannot stand up, my eyes are heavy, my nerve endings in my back and seat hurt, and my mind is in an unstoppable loop.  Trying to touch reality, I grab the pen on the table and start to scribble thoughts down (this works for me, though not for all).  
 
 
 
 
I write:
      11:01 am Frozen – Thinking of process to get new organization method in place.  It is to repeat over & over in my head.  Can not seem to make a loop pause or to stop.
     Pictures in my mind – file cabinet -> piles of paper -> computer -> emails -> taxes -> try to sort & can’t -> Repeats

 

     Question in my mind – Fast voiceover way – How do I know difference in action & backburner?  How many years of bills to keep?  What if IRS takes my EIC again?  Why I feel sad?  Why are eyes sleepy all of sudden?  Why can’t I move from table?
 
This loops over and over again for a length of time I cannot describe.  I only noted the time when I finally had the ability to grab the paper and pen already on the table in front of me and write down what was in my mind.  My hope?  That I would distract myself from the loop and be able to move.  It worked.
 
I was able to get up from the table and grab my laptop.  Trying to avoid the loop, I pushed the book from view and started writing this blog post.  As much as I desire to be productive and organized, and even though this Action Method seems like the first real way I can learn, but  the process has me frozen.  It is a change in my routine.  True, it will be a good change, but change is hard.  It is also a task that is not easy for me to execute, so I must learn to use other mental energy, reserved for other tasks, to put this new system into place.  My brain is not able to store this type of functioning in the place it is pre-determined to go, so I must use a different space in my brain.  This means I am actually using mental effort to “re-wire” my own mind.  It is hard and very tiring.
 
Don’t believe this is possible?  The Human Calculator, Rudiger Gamm, is not a math savant, but learned to do complex calculations on his own.  A scan of his brain, done while he performed math tasks in his mind, proved that Rudiger was using areas of his mind, reserved for other tasks, to do the math.  
 
I believe that my advanced adaptations are done the same way.  I work hard to train myself to use other mental space to complete tasks I am inherently poor at doing.  Though, there are some tasks that are so monumental that I just do not have the mental energy to learn it.  I have helpers for those tasks.
 

Answers

I don’t have any answers.  Each day and in each stage of life, autism presents new challenges.  Some challenges are left over ones from previous years when I didn’t have the skill to cope.  Other challenges are just unveiling themselves as I approach new areas of life.  the only thing that is becoming apparent to me is that I may not be able to totally work alone.  In building my business, I will need to make room for an employee or two that can keep me on track and organized.  I am not giving up on this new method, I just may need help executing the method until it becomes routine.  I still think The Action Method is the best method I have seen to date, and I plan on making it a part of my life.
 
If you take away anything from my story today, it should be that being frozen is quite different from inaction.  If I were presented with help from another and I refused to try, cooperate on any level, or apply what I know I can do – that is inaction.  That is a choice I make.  If I cannot move, or cannot ask for help – that is frozen.  I have no power over myself when I am frozen and all I can do is redirect my mind.

Why Can’t I Wake Up from Autism?

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