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.

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.

 

 

Trying to Fly Lest I Die Alone

My year has taken a sharp, unexpected turn.  In my planning for a year where I solve my trajectory problems, it seems the universe decided I should first deal with my past.  This is not necessarily a bad thing, except that most of my unresolved issues from the past involve either large sums of money or large sums of emotional stress.  Dealing with my past is a much bigger burden than running from it, and I suppose it is time for me to tighten the belt, as they say.  
 
Honestly, I was focused on the injustice of it all.  I had made up my mind that involving people in my life was the primary cause of my stress.  I was angry with people in my past for their lack of obligation to my family, for their lies, for their deception and for the fact that they were off living stable, sustainable lives while I was left to clean up the mess.  Financial struggles are a strange animal.  Some days I feel I can’t breathe and that I am moments away from having everything taken from me.  Other days, I really just don’t care anymore.  Instead of cowering, I strut around with this bold, cavalier attitude of, “Come get me assholes!  Take it all and relieve me of the worry!”  There seems to be no middle road for my feelings toward debt.
I spent a few informative hours with my good friends last weekend after a very full week of family holiday visits and travel.  We discussed a paralyzing fear that intermittently stonewalls my daily functioning, usually after a traumatic experience.  The trigger event, this time, was a dirty jerk on vacation who decided I should be followed and called like some kind of animal.  The event was frightening beyond any I had experienced in many years, thus opening up a black jar in my mind where I had stashed the pain of my past.  Though black jars are effective for hiding pain from the minds eye, the pain is never properly sorted.  Frightening encounters that creep into my solitude, wearing familiar colors and scents, can break open the black jar.  The ensuing battle is an emotional armageddon.
The final catalyst is this underlying urge to journey west.  Since leaving LA a year ago, I cannot seem to think of anything else.  My body is slowly consumed by this desire to live in the bustling city of arts, film and creativity.  Out west, the shore sings in pleasant keys, the ground vibrates in even tones and all of this is in total synchronicity with my own biorhythmic symphony.  Much like the albatross, I was once queen of the sky, until I crashed landed, breaking my wing.  As a bird who broke her wing long ago, I have not yet harnessed the idea that I could fly again, if I would only trust my feet to leave the ground.
 
With collection calls 10 to 15 times a day, funds falling short of day to day living costs, broken black jars and wrought with a desire to fly again, it is no wonder that I relapsed through night terrors this past week.  I think even people of the neurotypical variety would struggle to press together all these layers into a coherent fabric.  All I am trying to do is set my children up for the adventurous life they deserve and to avoid a life where I die alone.

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?

Accepting Change Leads to Tier 1 Penetration – And I like it.

After a weekend of adjusting to change, and processing the emotional fallout of those around me, I have reached some level of clarity.  Perhaps the change was good for me.
 
As one with autism it is understood, and on some levels expected, that I would have difficulty with change.  Change means processing new people, habits, patterns and input.  This creates in me the need to define everything, working them into a series of measurements which I refer to as algorithms.  True, algorithms were not designed for use in humans, so to speak, but they are for me as the host of a brain that runs more like a computerized machine than a fluid under the effects of evolution.  I am an alien.  I know that.



To avoid rewriting my algorithms, I found it easier to avoid change.  But is this wise?  Perhaps change is one of those necessary evils that can produce a positive outcome, even for Aspies?  I need to weigh the data.



To begin with, I must list the changes that have occurred recently in my life.
  1. Accept new people into my inner circle (or what I call Tier 1).
  2. Adjust my schedule, especially to make room for more spontaneity.
  3. Converse more.  More people means more conversation.
  4. Face my fear of the telephone.  Coordinating socio-economic activities often requires a discussion on the telephone, as does maintaining friendship with those who do not like to type.
  5. Process more emotions.  Anytime you add people, you add their emotional color to the social exchange.  I know this even though I can’t always read it.
To weigh these, I use my negative weight scale, or n-weight.  Each of the items on the list hold a 1 n-weight, making this a 5 n-weight list.  The scale itself measures from 1 to 8, with 1 being a minor adjustment, 5 being a significant change and 8 being a total life over-haul.  For example, taking care of a plant for someone has a 1 n-weight as the change in my surroundings and routine is minimal.  Having a baby, on the other hand, is an 8 n-weight, as it requires complete change in every aspect of daily life.  A 5 n-weight list may contain a series of 1 n-weight items, but the sum of them is still 5.  This means I must undergo a significant paradigm shift to adjust to these new changes collectively.



On the flip side, comfort is also measured.  Let’s say that I stay the same.  I accept no changes and live nestled into the scenario to which I am most accustomed.  No change = comfort, to which I assign 2 positive weights, or p-weights.  Comfort outweighs change 2 to 1.  This means that against a 5 n-weight list, I have a 2 to 1 comfort ratio, making the resistance of change a 10 p-weight motive.  Clearly not changing is a more positive result, on my scale.



But what happens when the change brings something or someone into my life that ultimately brings comfort, once I have adjusted to the change?  How then can I weigh the differences?  Three of my changes on the list above are impacts from the inclusion of one person or event, whereas the other two are derivative events.  These changes were all n-weighted in the start, but as I proceed the changes to my current paradigm, the added comforts out ranked my 2 to 1 scale system of no change versus change respectively.  As a matter of fact, the new comforts are still undefined, as to origin and weight assignment, but seem to display quite clearly an overall p-weight that reached beyond my system.  How is that possible?



How is that possible?



Maybe this is what Susskind said as he saw particles move as a wave?  Maybe this is what Pavlov said to his dog?  Maybe this is what onlookers said as they saw science students disappear under a fabric they invented?



It seemed like a problem.  Then there was the Planetarium.  I was attending a presentation at the Fernbank Science Center on “Bad Astronomy.”  Essentially the program debunked the validity of alien sightings and the accuracy of Astrology.  Anyhow, during the presentation, they posted Newton’s Law as a basis for their argument over the effectiveness of planetary gravity on human behavior.  I was quick to contemplate the math and use it as a perception filter for recent events.



F=GMm/d2, was the formula presented at the planetarium.  It was used to explain how distance effects the gravitational pull plants have on humans here on earth.  The greater the distance, the less effect gravity has on the mass of the two bodies.  When I saw this I knew that G is a gravitational constant, simplified as 6.673×10-11Nm2/kg2 with a standard uncertainty of 1.2×10-4, and immediately thought this could be why my human p-weight versus n-weight system is failing.  I never considered that p-weights increased in mass as the subject grew nearer to Tier 1.



As distance decreases between two humans, it changes the effect they have on one another.  As long as I remained in a constant state, or unchanged, I kept the p-weight effect of people on me minimized.  The distance lessened their p-weight.  Distance helped lessen the n-weight effect of change itself.  Comfort was also based on distance, but proportional to  the avoidance of pain.  This made a perfectly logical host for the 1 n-weight to 2 p-weight system.



In the past, I had never considered the inverse, the positive effects of people once they broke through my discomfort barrier.  The positive effects of love, companionship and even mutual idea exchange grow stronger as the theoretical distance between the two subjects decreases.  Context of human interaction has crept up on me from behind, again.  I had never thought to calculate the diminishment of distance.
So, if I am adding comfort weight based on no change at a 2 to 1 rate but then decreasing n-weights as distance decreases, my n-weight versus p-weight system is obliterated.  What does this mean for me?  Is the score set at Libido 1, Logic, 0?



I decided to head out of the house to search for clarity.  I went to Starbucks for a tea, grabbed a NY Times and snuggled into a large chair to read the paper.  My mind halted at the sight of an article title in the science section of the paper “…Proposal Puts Practicality Ahead of Sacrifice.”  It suddenly made sense what I needed to do.  I needed to put what was working ahead of my sacrifices, system or no system.
My system was ideal for weighing medial, day to day decisions such as what movie to watch or what food to eat.  When it came to the complex interaction of humans, I would have to accept that personality can not be weighed nor could I predict the impact of personality on me. The need to quantify everything had removed me from the prison of fear but transferred me directly to the prison of isolation, at least where Tier 1 penetration was concerned.   The system was effective at holding out trouble, but it inadvertently filtered out the amazing people who could change my life for the better.  Much like antibiotics, I was taking out the good with the bad.



My life trajectory has changed and for the better.  I have learned that the unexpected can usher in enlightenment, change can bring about comfort, and, as said in  This Side by Nickel Creek, “sometimes the unexplained can define you.”  Unexplained, this change in my life is, but unexplained doesn’t mean undefined, I know that will come to me one day.  Unexplained can mean immeasurable, and that I am ok with.

The year of r – Opening Thoughts

Family is in town and I have once again been summoned to help them find their way through the autism maze.  I don’t know them well, as is often the case with extended family, but I am always happy to help when I can.  As we talk, I am reminded of my own misery in that I continue to make strides in a life I do not want -and- I continue to accept help to that end.  I am not sure how I am fit to give this woman advise on how to help her autistic child progress when I am still not sitting on the throne of my own success.
 
If anything, these events are making me think about what I really want and how to achieve it.  For the last two New Year’s, resolution wise, I had vowed I would think positive.  Every morning, upon waking I would look at my reflection and say “By this time next year, I will be a millionaire.”  I don’t need to be a millionaire, nor do I care that much about money, but I thought the mindset would propel me forward.  It did, for a little while.  With each month, my income improved slightly and I found myself acting more assertively when it came to getting proper pay for my services.  It also pushed me to rebuild my website, narrow my expenses and improve my exposure by joining in on various forms of social media and scheduling more live events.  I did grow, just not as much as I had hoped.
 
The problem, I have found, is no longer my state of mind, but my state of being.  Your mind can believe that you can move mountains, but if the hands won’t carry the stones then your belief is futile.  I realize that I need a motive to change my state of being.  The phrase “this time next year” has given me hope, but it is an infinite deadline that I do not have to physically make happen.  I have also managed to avoid admitting failure.  Failure; there’s is a word we have made into a social black hole.  When did we decide it was a bad thing to fail?  Failure means we tried.  Failure means we applied effort but found ways that are broken, inconsistent, ephemeral or impractical for our personal applications.  We fear failure where we should really fear capitulation. Maybe what I have really done is found a fancy way to avoid taking action. 
 
 
The act of fearing failure no longer seems rational, but I have to determine the source of my uncertainty. Given my infinitely geeky ways, I immediately think of the uncertainty principle in quantum mechanics which basically states it is impossible to measure the current position of a particle and the future motion of a particle at the same time.  True, this only applies to particles small enough to be governed by quantum mechanics, but I think it could certainly shadow my own existence.  Perhaps I was so busy measuring my current position in life that I was unable to properly predict the proper path to my future position.  Or, maybe I was so fixated on my future progression, I forgot to measure my current position.  Either way, I am left with two fixed points with no real solution on how to travel between them, so it is time to make a change.  
 
If I dilute myself to a word problem, what I really have here is a distance problem, d=rt.  This time, I know how far I want to go, distance (d), and I know how much time I want to use to get there (t).  All I need now is to figure out how fast I need to move, or in this case how much work I need to do to achieve success (r).  It becoming clear to me that 2012 will be the year of r.  To solve for r, I will have to strip my goals of any financial limitations, personal strife or public criticism and funnel my goals into strict timelines, all which will collectively fit into a time period of 1 year.  Please pass the Pepto Bismal.
 
 
Solving for r is going to push me into overdrive if I plan to complete all my tasks in one year.  In order to be efficient, I think I am going to have to prioritize my smaller goals and categorize them into three main categories – Reset, Energize and Establish.  Reset consists of actions that restore my financial life to a debt free status.  (My debt is a status I entered recently following a divorce.)  Energize consists of actions that increase my earning potential or my assets.  Establish consists of actions that settle me into my final destination as a successful contributor to the entertainment industry residing in Southern California.
 
 
I will also have to embrace my failures more specifically so that I don’t repeat them. I think my mistake in the past has been thinking I had to achieve everything with no help in order to be independent.  Maybe I do need to do things on my own to be independent, at least on the popular view of independence as the “I am my own island,” survivor crap, but it is a waste of energy to focus on this.  Why would I work so hard to climb Mount Everest alone?  The self-satisfaction of knowing I made the climb?  That’s not for me.  I know I can make the climb.  I’d rather have someone to share the moment with.  It seems to me that my best energy arises when my dreams come to reality with a little help from my friends.  I will need to ask for and accept help before I lose control.
So, 2012 is the year of r.  Maybe my goals this year are huge and possibly unreachable, to most people, but I don’t care.  I would rather be a dreamer and fail, than be assuaged by realism.
-Laura Nadine