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.

 

 

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.