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.

 

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

Enough, Enough, Enough!!!! A Social Skills Lesson for the Neuro-typical World.

My morning routine is the most important routine of my day.  Every morning I eat a bowl of Honey Nut Cheerios, drink an 8 ounce glass of Hot Tea, and check my computer for weather and news updates.  After reading the news, I scan through Facebook and Twitter for updates from my friends.  If I am lucky, I will run across a post or two that really lift my spirits, helping me gain energy for the day.

 

As a person with autism, I often hear that people with autism lack empathy.  It is a hot button issue of debate between most Autistics and the medical and mental heath professionals.  As autism continues to receive negative press, following the Sandy Hook tragedy and the alleged tie to Asperger’s, the empathy debate has been rekindled, but this time it is cutting deeper into the wounds of Autistics.  This particular social tsunami is reshaping our societal shores, which is traumatic for those of us who are forced to live at the edge.

 
 
 

What Is Empathy?

 

Today, empathy is defined as the action of understanding, being aware of, being sensitive to, and vicariously esperiencing the feelings, thoughts, and experience of another.  The word empathy has only been in the English Language since 1909.  The English word was coined by a British Psychologist named Edward Titchener in his studies on the structure of the mind, better known today as Structuralism.  Dr. Titchener wanted to classify structures in the mind like chemists classified elements into the periodic table.  Without getting too technical, Titchner believed that the goal of psychology was to study mind and consciousness.  He defined consciousness as the total of mental experience at any given moment and the mind as the accumulated experience of a lifetime.  He felt these experiences were the basis of reasoning.  Since today we focus more on behavioral and cognitive psychology, the theory of structuralism is mostly ignored.

 

When using the word empathy, Titchener was attempting to translate the German word, Einfühlungsvermögen” meaning “feeling into.”  If we follow the etymology through the Greek, the word can be tied to meanings such as physical affection, passion, partiality, and suffering.  What is most interesting is that empathy is often related to Alexithymia, from the Ancient Greek modified words lexis and thumos meaning “without words for emotions.”  

 

Why the painful and dry etymology lesson?  It should be understood how words begin and evolve into their current meanings.  According to my research, the origin of the word empathy focused more on the feelings of self rather than the ability to recognize and relate to the emotions in others.  In addition to that, the word Alexithymia, which is often used in tandem with empathy, seems to more accurately descried what we autistics experience – a loss of words to describe emotions.  The idea of Einfuhlung (the German word that gave birth to empathy) wasn’t really explored until the publication of a philosophy paper by Robert Vischer in 1873.  In other words, empathy derived from philosophy and is a relatively new idea in the grand scheme of time.

 
 
 

So Are You Telling Me There Is No Empathy?

 

No.  I am simply recounting the history to show that the concept of empathy is a philosophical and theoretical construct that we have redefined over time to label and understand the basic human idea that we feel emotions for others even when the other persons feelings are different from our own.  (check my sources at the end of this article for further reading)

 

I will propose, however, that we cannot measure the lack of empathy in another human.  Why?  Well, we can’t measure empathy so how can we measure a lack of empathy?  In my opinion and personal experience with autism, the supposed “lack of empathy” associated with autism is actually an illusion caused by Alexithymia, compounded with sensory system overloads, and a thinned membrane in the brain that inhibits the ease of bilateral communication – all which are manifested in autism.  In other words, since there are so many communication and expressive deficits in autism, along with the inability to sync thoughts in real time (or when immersed in the moment), we autistics can appear unfeeling when we are actually quite moved.


 

Ummm, What?

 

You’re right, I promised not to get too technical.  Let me try an analogy.  

I used to own a 1967 Malibu.  Being a junk yard find, the car had many issues, including electrical issues.  I bought a new wiring harness and went to work.  The new harness was a re-production part and included wiring for air conditioning, which my particular model did not originally have.  However, since other Malibu’s had a A/C option, I knew I could get it to work.  I spent hours running wires, splicing, connecting and testing.  This job even required the removal of the dash, which in 1967 was solid metal and very heavy.  After several days and countless hours, every wire was finally connected.  I hooked up the battery for a test. 

 

I never could have predicted what happened next; when I attempted to use the turn signal, the windshield wipers moved, when I depressed the brake pedal, the brake lights blinked, and when I turned on the heat, the radio came on too.  I was floored.  The first thought that ran through my mind was that I had incorrectly hooked up some wires.  For the next several days, I re-read the wiring diagrams and re-checked every single connection in the car.  Everything was in its proper place.  Defeated, and confused, I took the car to an automotive electrical specialist.  He smiled and told me to check the grounds.

 

Car electricity requires a ground.  A ground is a place where excess or “leaking current”, called fault current, is carried away harmlessly.  Since I did not properly ground the electrical system of this car, the fault current had no where to go.  Since the current doesn’t just disappear, it ran back through the system to other points, causing the strange behavior in the car.  Since the car was old with no on board computer system, the car could not communicate with me. 

 

In autism, we have a fault current and no ground.  Overstimulated by our heightened sensory system and trapped in thought by our communication system, we display an array of behaviors that are not related to the cause.  Flapping, humming and rocking are just a few examples of this, as is what looks like a lack of empathy.

 
 
 

Tying It All Together

 

I become very agitated when I perceive hypocrisy in another. During my morning news reads and social media scans, I keep seeing hateful messages in everything from headlines to user comments.  Obama shows support for gay-marriage, and then the internet is barraged by hate talk.  People begin to post pictures online of them eating at Chic-fil-A, an openly anti-gay institution, while using a technology built on the achievements of Alan Turing, a gay/cultural icon.  When news outlets ran with rumors that Adam Lanza, the Sandy Hook gunman, had Asperger’s Syndrome, again the hate talk flooded the internet stating that the lack of empathy in autism causes autistics to be a violent threat to society.  Posting hate rhetoric and reporting harmless autistics to the police are behaviors that are the furthest from empathetic.

 

Yet, how did the autistic community respond?  Did we post hate rhetoric about NT’s?  Did we boycott all NT owned businesses?  Did we rant or rave using hypocritical actions?  No.  We mourned.  The autistic community was sad, scared, and expressed a deep compassion for the victims and their families through a host of generous and symbolic gestures.  When we were attacked for being autistic, we posted photos of ourselves, listed out accomplishments and led the world to a more compassionate view of autism.  Through compassion and empathy, we separated the autism debate from the Sandy Hook tragedy, giving the focus, honor, and respect the victims really deserved.  Why should their tragic deaths be obscured by an irrelevant debate over autism?

 
 

Autistics are great mimics.  We learn communication and the expression of emotion through hours of hard work, and by mimicking that which we see displayed by the neurotypical world.  We autistics are struggling in the dark to show you our compassion, our intelligence, and our accomplishments amidst a social firing squad, armed by an apathetic political agenda.

 

If the neurotypical world wants the autistic world to better express our empathy, then perhaps the neurotypical world should be a better model of empathy.  The hate rhetoric, the hypocrisy…..enough, enough, enough. 

 
 
 
 
 

Some of My Sources