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
 
 
 
 

When I Was in School – Conversation with mom

I spend a great deal of time speaking about autism in public and helping parents develop life and homework strategies for their Aspie children.  This work is hard, but I feel it is very rewarding to help children avoid the stress and turmoil I had while in school.  Many times, parents will say things like “I can’t imagine you had this problem” or “you are so organized” or the most common, “but it seems your autism is so mild, unlike my son/daughter.”  
 
I know parents do not mean to offend me when they say these things, but such phrases are upsetting to me.  Every time a parent uses these phrases, I am immediately demoted and my hard work goes unrecognized.  The truth is I worked very hard to develop and incorporate strategies that help me function.  In addition to my past efforts, the ongoing work to maintain these strategies encompasses so much of my mental energy that I must plan times to retreat in order to avoid meltdowns.
 
To illustrate my point, and add validity to my plea, I decided to write a two part piece on my troubles in school and how I adapted.  For this first part, I interviewed my mother about how I was when I was young, talking about my struggles in school, my differences and how if affected my life.  In the second part, I will talk about how some of these problems persist and what I do every day to cope with them.
The Interview
For the first time since I went public with my diagnosis, my mother will talk about my struggles in school and what I was like as a child.
Laura:  Thanks, mom, for doing this. You have said in the past that you raised three children before me, my siblings were 17, 15 and 8 when I was born, but that I was different.  What do you mean by that?
Mom:  It’s is hard to outline because it really was just a feeling.  You saw things from a different angle than the rest of us.  You were very dogmatic about your views, even at a young age, and you over-analyzed everything.  With the other kids, if they got in trouble I only had to say with a firm voice, “don’t do that.”  If I did that to you, you would get upset and tell me to stop screaming, even though I wasn’t screaming.  I had to go around the issue to get you to understand what you did wrong.
 
You could do difficult things, but not easy things.  For example, you could do higher math, but you couldn’t multiply.  You struggled to learn to tie your shoes, learn to read, and learn to ride a bicycle.  However, you had an advanced vocabulary and an exceptional use of words, even as a toddler.  One oddity is you could dance at age 4, you could play the violin well at age 9 but you couldn’t tie your shoe until you were 12.
 
Here is an example of how advanced you were; you came to me and said, “I tink I am going to put on my coke and glugs because it’s berry, berry cold outside.”  You couldn’t be any older than two, but you always talked in complete sentences, even though you sometimes stuttered.  It wasn’t stuttering like in the King’s Speech.  It was stuttering entire phrases like you couldn’t get the words out fast enough.  This was still very advanced speaking for a child.
On the other hand, you didn’t like change, at all.  You didn’t like certain clothes because you didn’t like the texture of the fabric or the color, especially if it was yellow.  You said yellow gave you a headache.  Once, when you were an infant, I put out flowers while you were napping.  When you awoke, I brought you into the room with the flowers and your entire body stiffened up and your eyes locked on to the flowers.  Most infants don’t notice these things and even once kids do, they don’t stiffen up or freeze like you did.
I can’t really explain this any better, you were just different.
Laura: I have been told by my teachers that I showed exceptional talent in dance and music.  What did you see?
Mom:  Anything in the arts field you caught onto very rapidly.  If you heard a song once, you could play it.  In dance, you watched a class you weren’t even in and you caught on to the steps.  So, the teacher, Ken Passman, came to me and asked if you could dance in the show.  You did really well, every step was right, but because you watched it from the doorway, you did everything backwards.  You didn’t know to change perspective, but you knew the steps.  Even with instruments, you could just figure it out on your own, like with the piano and the guitar.  Even with the violin, you learned very quickly, played in tune and never squeaked.  Never.
Laura:  When I was in school, I struggled a great deal.  What areas did you feel were my weakest?
Mom:  You had trouble understanding written directions. Every night we would sit down to do homework in the kitchen.  You would try to work and then get frustrated and then I would have to explain the instructions to you.  Once you understood the instructions, you would do it.  It may have had something to do with your reading.  You had trouble reading and understanding what what it meant, but you could memorize your spelling words flawlessly.   You could memorize anything.  At age 6 you memorized all the trivial pursuit cards.
 
Other problems….I never understood this really, but you would come to answers that were correct, but you couldn’t explain how you knew it.  It is sort of like you playing the piano.  You don’t just play chords, you play complex classical tunes with the proper fingering, even with no instruction.  How do you do that?  There were certain things you were not taught, but knew and knew in great detail.  Sometimes you would speak in detail about off the cuff things that shocked us all.
 
With school, you never understood the concept of school.  You didn’t understand why you had to go.  You said you knew all those things so you didn’t need to go.  You especially hated the first two weeks of school when they reviewed last years material, and you liked to take every Wednesday off.  Yet, you loved to learn.  I think it was the approach schools use that didn’t appeal to you.  You liked learning at your own pace and you don’t filter out anything.  All the things the teacher would say and all the text in the books were all equally important.  You couldn’t understand why they wrote a paragraph if you only needed to know a part of that paragraph.  It was like you felt you had to memorize verbatim everything at school.
Prioritizing was an issue too.  For example, lets say you have a list of things to do.  One might be to make a cup of tea and a piece of toast.  You put the bread in the toaster, which means you can check that off the list.  Next you make the tea, but as you are making the tea, your toast starts to burn.  Instead attending to the burning toast, you would ignore it and would finish the tea.  You wouldn’t know which needed your attention first.  You had trouble deciding which things are more important, not in a selfish way, but you are just unable to prioritize incoming events.  You still do that.
Laura: What about emotions.  Did they affect the way I performed?
Mom:  You would prepare and prepare and prepare for a concert.  You were meticulous and conscious about what you had to do, but then we would get to the concert and discover you forgot to bring your music, or your violin.  You seemed to get overwhelmed with the excitement, which hindered your ability to stay organized.
Emotions would make you freeze.  No one could look at you and know if you were enjoying yourself, or were upset.  I would know you were upset because you would play your violin or rearrange your bedroom, which I found strange because you don’t like change.  
When it came to school, you were always frustrated.  ALWAYS.  If we had known then that it was Asperger’s, I probably would have put you in a different school where they had people who could deal with autism.  I would have had ammunition to get help for you, and it would have relieved my mind a lot.  I couldn’t understand why these things happened to you when you seemed so capable, but a diagnosis would have given a real reason making solutions available.  You were so intelligent, I couldn’t see why you struggled through school.  Knowing autism tells me why.

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?

The APA cured me of Autism.

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

Not Knowing Emotion or Not Knowing How to Show?

Emotions are difficult to discuss because of their abstract nature.  The way Neurotypical (NT, from now on) people express their feelings to one another really have perplexed me for most of my life.  There seems to be this need inside the individual to have others understand how he or she feels, but a reluctance to “show” that emotion.  Yet somehow the outsider is supposed to read this conflict, decipher the emotion and react properly.  I cannot understand this, but I can tell you that I cannot operate my emotions in that fashion.
I believe that as an Aspie, that I do feel emotions. I see myself as a burn victim of emotions where emotion is so hot and fiery to me that it burns me leaving pain long after the incident.  As a result of that ongoing pain, my interior emotional states and my ability to read the emotional states of others are superseded by my pain.  For me, emotional states and expression must have a place to go and therefore elevate to a more cerebral status.  In other words, I express how I feel with the giving of gifts, analysis of words, presence needs from others and through my special interest.
If we take NT love, for example, between a parent and child, we see a desire in the NT parent to be loved by the NT child.  The NT child shows this by seeking approval from the parent.  You may argue that there is more to it than that, but really human love at its basic is a sort of approval seeking  and validation system (storge).  It is more automatic and linked with familiarity.  Most people want to know they are loved and that what they are feeling is “normal” or valid. When our children become teenagers and stop seeking the approval of their parents, the love between that child and his or her parent must evolve to a more unselfish love, which usually presents a new bond as the teenager enters young adulthood. There is no longer a familiarity to rely upon and for the relationship to survive, the love must evolve into an uncircumstantial love (agape).
With an Aspie child, that system of approval seeking is not there, mostly because we don’t care what others think.  Often times the NT parent misreads this lack of approval seeking in the Aspie child as an inability to return love leaving the NT parent to questions if the Aspie child feels love at all.  In reality, the Aspie child feels love for you but already in that advanced way that adult children hopefully evolve love their parents (agape).  This love is an unselfish love far removed from approval seeking and validation.  Aspie love is not there to fill anyone else’s needs for love; Aspie love is there as a free gift for no particular reason at all.
If NT parents can embrace this love of their Aspie child and release their need for validation, then a wonderful joy will result.  The NT parent will start to notice the unique ways the Aspie child relays love and both will begin to believe their love is always there.  As an Aspie myself and a “burn victim” of emotion, I can tell you that the process of sorting how I feel and how to express my feelings are a long string of laborious, life-long tasks.  There is no greater reward for that hard work than just knowing that my friends and family freely love me, no matter how poor I am at showing my emotion in conventional ways.
Laura Nadine