The Perfect Life

The Perfect Life

Often I have been asked, by conference attendees who come to hear me speak, what I want out of life.  People are curious if my future includes people, independence, and decadence, or a scary isolated existence.  Not that there is anything wrong with living alone, but I do believe most people are shocked when I say “I prefer to live with someone.”

Money continues to be a large reason why I still am not where I want to be, only because we live in a society where access to money is necessary to live.  I’ve tried not to dwell on that too much, and instead try to enjoy each dollar to its furthest reach.  I don’t need millions, I just need enough.  Still, I think there is no harm in dreaming.  It helps us set goals, and is generated from that inner desire to see the word for all its good rather than the bad.  As I have said before, dreaming is the conceptual art of the inner self.

Assuming money is no object, and my life work blossomed just as I had hoped, then what is the perfect life for me?

I love the ocean.  I would want to be as close to the ocean as I could get, ideally in California, though any warm climate ocean town would be acceptable.  The beach at my back door, or at least in walking distance so I could view the waves anytime I needed to be calm.  My plot of land would be the smallest I could possibly have that would allow for my home to fit snugly.  My home would be a Frank Lloyd Wright Usonian style home, possibly like the Jacob’s house or the Goetsch-Winckler Usonian house.  It would have to have three bedrooms, even after my kids move on, because I would want my children to always have a room to stay in anytime they wish to come home.  Being environmentally conscious, I would love to fit the home with solar panels, and use led lighting. The wonderful thing about FLW homes is all the natural light.  My studio would be in home, where I could record, write, and create on my own.

Image

I’d love to own a Jeep, though I’d love to convert it to a no emission vehicle.  Hopefully, my home would be located in a place where bicycle, walking, or public transit would be sufficient.  I would spend time in town people watching, meeting locals, and learning about the world in which we live.  I would be the owner of an arts school that uses a teaching approach comprised of unconditional love, open to people of all learning types, and offered the most open scholarship program in the US, making sure that even the poorest of students can learn to play an instrument.

Given that my dream means that my financial needs are covered, I would donate most of my free time to helping public and private schools create disability friendly schools with integrated classrooms.  I want the next generation to grow up believing they fit into this world just as much as anyone else.

My perfect life would also include a not-so-perfect someone to live and to share the beauty of life with.  He wouldn’t need to share my interests or be anything like me, just simply be my counterpoint.  You see, to me, love is not like harmony, but really is more like counterpoint.  In music, a harmony supports the melody but is usually secondary to it.  Counterpoint is when two equal melodies are played together to create a complex and intricate sound.  They sound good together, oscillating between supporting the other melody and leading it.  Sometimes the two melodies even argue, but they always resolve in the end.  To me, counterpoint is love.

My perfect life has no specific goals or ambitions for my children.  I would simply just support what ever goals and ambitions they have for themselves, even if I struggled to see it clearly.  Just because we are forever tied together by DNA and by unconditional love, doesn’t mean I have any right or entitlement to insert myself into my children’s picture of their own future.  I must be invited by my children, and continue to love them even if I am not invited.

Finally, my perfect life would leave behind a story that could inspire others, even if it is just one other.  Pain sometimes needs to be shared, so others do not feel alone in theirs.  Yet, beyond that we should freely give away parts of our triumph, not to our own detriment, but in healthy amounts so as to show others that it does in fact get better.  If a spoonful of sugar helps the medicine go down, then be the spoonful of sugar.

There is not much more to a perfect life for me.  Seeing new places in the world is always welcome, and I do hope to travel as a speaker to places outside my home country.  It really is just that calm stability that comes with accomplishment that I seek.

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/

Autism Awareness is in My Blood

Despite all that has gone wrong these past few weeks, I still feel it is important to do my part for autism.  Awareness is a huge effort and must be given our best efforts.  Since the 1970’s, the Autism Society has set aside the month of April to celebrate autism awareness month.  Many American’s join in with ribbion wearing, blue lights on the porch, and a host of community events.  Other organizations, such as Autism Speaks, has taken this idea a step further with World Autism Awareness Month in an effort to make autism awareness a global collaboration.  The movement is growing.April is certainly a big month for autism, but what about the year round efforts of smaller groups?  One such group that grabbed my attention was The Six Degree Project.  Spearheaded by autistic student Carly Fleischmann, and students Emily Albert and Mia Kibel, these students didn’t wait for April.  This group of students from Northern Secondary School in Toronto, picked the often frigid month of February to raise awareness for autism.  The project sent long, warm, blue scarfs to celebrities and patrons, asking them to wear the scarf during their public appearances, and then post the photo to the Six Degree Project’s Facebook page.  Acting as a wonderful metaphor, the scarf seems to illustrate the warmth that grows in the heart of the communities who embrace autism by spreading a positive image.

I was so moved by this concept, I immediately contacted the group.  They promptly responded to my inquiry and seemed excited that I wanted to participate, despite my non-celebrity status.  Delighted, I sent in the form an awaited the release of the scarf.

The package arrived on a cold, wet afternoon.  Ecstatic, I ripped open the padded envelope right there at the mailbox.  It was like I was a child receiving a special delivery from Santa!  I was pleasantly surprised to see quality and detail in the design, and that the scarf was long enough to be utilized as more than a decorative item.  I was pleased.

It didn’t seem enough to just wear the scarf.  I had been planning for months to make an autism awareness music video that would shed a positive light on autism, and the abilities of autistic people.  With the scarf as inspiration, I picked the song You Raise Me Up, laid out the storyboards, and began the search for participants.

Since autism is such a sensitive topic for many parents, I struggled to find families willing to brag about their autism.  At first, I was deeply disappointed by the lack of involvement, but then I realized how much we needed to make this video.

Frustration during a creative project is unavoidable, it seems.  Creativity also seems to be accompanied by a truck load of self-doubt.  Perhaps this is how we stay humble, or how we keep therapists in business.  Whatever the reason, I was 2 days from the deadline, and practically paralyzed by my erratic executive functioning skill set.

Not knowing where to turn, I texted my good friend Anna, “Why aren’t I happy with anything I am producing today?”  Using the exact number of words she knows I need to not be overwhelmed, she eloquently replied, “Because your ambition is being held back by your means.”  She was right.  Budgetary limitations and lack of access to programs has been a huge burden on my process.  Why were my means limited?  I am a hard working, productive member of society, but I just can’t seem to get that leg up I need to be truly independent and financially secure.  I didn’t need to make this project only for the Six Degree Project, I didn’t need to make this project only for the parents who feared being public about autism.  It was apparent that I also needed to do this project for me.  With a renewed sense of energy, and the positive reaffirmation of my good friend, I dove head first into the video.

Working until the early morning hours on the eve of my 36th birthday, I completed the autism awareness video.  The video below is on my YouTube channel http://www.youtube.com/user/liquidc2

Visit my website for more information on what I do, and to watch the official countdown timer on the homepage!  http://www.lauranadine.net

Don’t forget to visit The Six Degree Project and show your support by purchasing a scarf.  http://thesixdegreeproject.com/

I am proud to support autism and the creative movement started by The Six Degree Project.  I hope the world will one day be warmed by the love that comes with awareness, and acceptance.

Laura

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

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

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

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

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

North is Up

I kept getting lost.  It was becoming a regular occurrence for me every time I ventured into a new part of town, which seemed odd because I was always quite good with maps.  I was usually the navigator on family trips, great with a compass and could recall maps in my head whenever I needed.  
 
Being a technology geek, I was eager to switch to GPS once the portable versions became affordable.  I bought a Garmin Nuvi and never looked back.  I loved the ability to search for places to eat and the detour function which rerouted me during high traffic times.  I couldn’t have been happier with my new technology.  But the euphoria didn’t last very long.  Over time, I lost my ability to remember the maps.  Despite having real time directions, I was often lost, frustrated and irritated that I couldn’t orient myself in space.
 
My problem wasn’t just with maps.  My ability to navigate through my own head seemed dulled as well.  In a year I had so adamantly began with a new direction, the year of r, and a focus to change my future trajectory forever, I couldn’t comprehend why I felt so lost.  I could generate a cornucopia of patented excuses like relying on technology too much, a thirty-something slump, or the bad economy, but they would only be excuses, not explanations.  So, I did what most Americans with access to a public library would do.  I decided to pick up self-help book number 182.
 
This self-help book was directed toward women and the mental state of earning more money.  I worked all the exercises, followed the directions and even wrote my thought journey in my journal.  I was comforted by a temporary sense of accomplishment, similar to the comfort of pulling a warm blanket out of the dryer and wrapping it around your body.  It was a lovely sensation, but I couldn’t stand at the dryer all day just so I could warm my blanket every time it cooled.  The GPS, the patented excuses, the warm dryer blankets, they were all just momentary comforts that were intertwined in ways I could not see yet.
 
Early May of 2012 brought a flurry of activity.  I had returned to the library to re-check out my library book for another 2 weeks, and my dryer blanket was wearing thin from my obsession with warming it in my dryer.  Then, a very dear friend of mine needed my help with a move to Utah, so I put down the blanket, earmarked the book and packed up the GPS.  In a 16 foot yellow Penske truck we had aptly named Bertha, my friend and I set out for the west, with Garmin as our guide.  Minutes into the trip, my friend decided that the 3D view of the little car on the road was not satisfactory.  
 
“No, no,”  she said, “North has to be up.”  
She shuffled through all the menus and meticulously changed the settings of the map orientation to a birds eye view with north facing up.  She tinkered with the volume and the brightness of the display and then set the spoken language to Japanese.  No, she’s not Japanese.  Some things are better left unexplained.
 
Even as the GPS shouted incomprehensible phrases at me, I never got lost.  Two thousand miles of new roads and I stayed directly on course.  Visions of maps were burned into my memory and my cardinal sense of direction was returning.  I chuckled at the realization that my wandering wasn’t because I was thirty-something, or that I relied too heavily on technology, or that I needed a warm blanket.  It had nothing to do with where I was, or where I was going.  It was my orientation; my view.
 
When I got home, I returned the book to the library and put away the blankets.  I understood where I was, and suddenly where I was going didn’t seem so scary and unknown.  The year of r had been running smoothly.  I just hadn’t been looking at it the right way.  I organized my obligations, attacked some debts, and kickstarted projects I had left sitting way too long.  I had come to three conclusions regarding the year of r and my view on life:  
 
Number one, I had accepted the art of dreaming.  Dreaming is conceptual art of the inner self; there is no path in life.  When we can accept that there is no path, we can decide on the destination, therefore making the footsteps a perfunctory affair.  Values merely free our hands of baggage so that we may hold hands along the way.  
 
Number two, the danger with warm blankets is that we can miss out on a happiness we never knew could be ours because we were too busy settling for a lesser joy.
 
And finally, number three – North is up.

 

The New Millennium Christmas Carol

2011.  What seemed to be a mediocre financial start to a year slowly slipped into a year of bill juggling and involuntary fasting.  Not that different from a character out of a Charles Dickens novel, I began to feel like a societal outcast while the big bad banker living behind the iron fence made my life miserable.  Like many Americans, I have spent this past year struggling to make ends meet during the world wide financial famine.  I am self-employed as a music teacher, a single parent of two children and live well below the poverty line.  Because I live in a rental home in a middle class neighborhood, many are not able to see how much we struggle.  Many have this notion that poverty is strictly bound to homelessness or trailer parks, with the kids running around shoeless and filthy, even though this is not always so.  Some of us live in the shell of our former means; a silent poverty.  You see, before the fall, I was married, enrolled full time as a Psychology student and had access to medical benefits and an income ten times greater than what I make now.  I didn’t go out on a shopping spree or live foolishly above my means.  I, like many moms, relied on another for support.
As Christmas approached, a holiday I usually love, I became nauseated.  I lost many nights sleep worrying over not just gifts I wanted for my children, but meals and my car payment.  I was loosing students, many for reasons beyond their control.  To make matters worse, I was handed a lawsuit over a credit card I was unable to payoff, that was used to pay for car repair and the remainder of my daughter’s Tae Kwon Do contract.  The collection calls were now coming 5 to 6 times a day, trying to collect on an education I was never able to finish when the banks felt my separated status made me too big of a risk.  
 
My heart sunk as I struggled to understand what was happening to me.  So many times, people say that Christmas is not about the gifts but they truly miss the point.  My children live in a world where they are expected to accept the warm, fuzzy feeling of accomplishment when they succeed, but yet tolerate multi-layered punishments when they fail.  The world we have set up for them is so saturated in negative reinforcement that children hunger for smiles and contentment.  Christmas is the one time of year where children can enjoy benevolence and generosity for no real reason other than to celebrate every moment that they made a positive mark in their universe.  Yet this year, I feared we wouldn’t be able to have Christmas in our home.
I received a call from a local school that was somehow aware of our financial difficulties this year and offered help.  At first I turned them down.  I never wanted to be the type of person who relied on welfare checks or food stamps for support under the fear I would never come off of them, and I had so far managed to limp along without them.  Yet, once the stark realization hit me that I was beyond broke, I accepted the help.  They requested I give a list of wants and needs, so I asked for help with groceries.  I expected to get a few can goods if anything and hoped that would allow me to redirect funds I usually spend on groceries to gifts.  Any small token of help was projected to be a great relief.
I never expected what happened next.  The outpouring of help was astonishing.  Not only did we get help with groceries, but also with gifts.  Clothes, shoes and gift cards to various local shops came to us in abundance, but it didn’t end there. Friends picked up on my frustration began to help me in ways they could and I started receiving calls from local benevolent organizations and churches offering help.  The help I received was so amazing, that I found it necessary to turn the offers away instructing they send help to other families in need.  It felt so wonderful to say “I no longer need help because I have been given everything I need.”
This Christmas, the cupboards are full, there are gifts under the tree and all my monthly bills are paid up.  I know that come the start of the new year the collection calls will continue and I still have that pesky lawsuit to pay, but at least for the next two weeks, I can watch my children smile and glow in the light of generosity.  For this I send a humble, warm thank you to every stranger and every friend who felt our smiles were worth saving.
 
Merry Christmas.