Tuesday, June 16, 2015


As a professional, I have seen so many incompetent, truly dangerous "experts" in many different disciplines, whose decisions and misdiagnosis contribute to further victimizing those who are the most vulnerable in our society.
I am not advocating that assessments by professionals be ignored but rather that people become more pro-active, involved with those who they seek help from for their children, loved, ones, or for themselves.
It is your responsibility to learn all that you can about the problems you seek help for and to not simply blindly follow the god like words of the "experts".
It behooves every individual to think for themselves in partnership with the professional, so as to satisfy your own understanding of what is happening.
Too many people are intimidated by professionals and allow themselves to be unquestioning, passive followers of whatever is told to them.
In yet another example of how an out-of-control system of "experts" can do devastating harm, this is about a teenage boy who was diagnosed with autism at a young age and has risen to stellar heights after escaping from the clutches of the special education system with the help of his concerned mother.
When Jacob Barnett was 2 years old, he was diagnosed with moderate to severe autism. Doctors told his parents that the boy would likely never talk or read and would probably be forever unable to independently manage basic daily activities like tying his shoe laces.

But they were sorely, extraordinarily mistaken.

So far nobody can define what autism really is. It’s also a one size fits all diagnosis while it’s pretty clear that one kid with autism can be completely different from another. 

Some genetic diseases (Rett syndrome for instance) lead to autism. The problem is when you are trying to find etiology of a disease that is not one disease, but a collection of different ones, it’s like trying to find a cure for fever.

The key, according to mom Kristine Barnett, was letting Jacob be himself  by helping him study the world with wide-eyed wonder instead of focusing on a list of things he couldn’t do.

Following this diagnosis of autism at age two, Jacob was subjected to the cookie cutter special education system that focused on correcting what he couldn’t do compared to normal children. 

For years, teachers attempted to convince Kristine Barnett that her son would only be able to learn the most basic of life skills.

When exposed to the special education system of therapy, Kristine noticed Jacob would withdraw deeply and refuse to speak with anyone. 
Even though she found it “terrifying to fly against the advice of the professionals,” she knew in her heart “that if Jake stayed in special education, he would slip away,” Kristine relates in her memoir, The Spark: A Mother’s Story of Nurturing Genius.
School therapy specialists claimed Jacob Barnett would never be able to read or function normally in society. 
But the boy’s mother realized when Jacob was not in therapy, he was doing “spectacular things” completely on his own.
She decided to trust her instinct and disregard the advice of the professionals. 
Instead of following a standardized special needs educational protocol, she surrounded Jacob with all the things that inspired passion for him and was astonished at the transformation that took place.
So began a journey for Jake (CLICK HERE) that would lead to such unexpected achievement that the whole premise of standardized therapy for this ‘special needs’ child would be blown to bits.
After years of frustration and little progress, Kristine made a radical decision in the eyes of the special    
education system, she took Jacob out of school and prepared him for kindergarten herself. 
She let him explore the things he wanted to explore. He studied patterns and shadows and stars. At the same time, she made sure that he enjoyed “normal” childhood pleasures – softball, picnics – along with other kids his age.
“I operate under a concept called ‘muchness’,” Kristine said “which is surrounding children with the things they love, be it music, or art, whatever they’re drawn to and love.”
Jacob also has an IQ of 170, higher than that of Einstein. 
He is history’s youngest astrophysics researcher, has spoken at a New York TED (Technology, Entertainment & Design) conference, and appeared on a variety of news interviews, including 60 Minutes and the Time magazine website.

His mother, not sure if her child was talking nonsense or genius, sent a video of his theory to the renowned Institute for Advanced Study near Princeton University.

Gifted: Aspergers syndrome and the conditions affecting child development

Autism: A condition that starts in early childhood, usually involving serious developmental disabilities with social interaction and communication.
People with this disorder can have a range of abilities, from being severely disabled to gifted. It is estimated one in every 150 child has the condition.

Aspergers: A syndrome that is similar to autism, but with the distinction that those with it typically function better, have normal intelligence and near-normal language development.

Savant: Rare condition in which persons with developmental disorders have astonishing islands of ability, brilliance or talent that stand in stark contrast to overall limitations.

According to the Indiana Star, Institute astrophysics professor Scott Tremaine himself a world renowned expert  confirmed the authenticity of Jake's theory.

In an email to the family, Tremaine wrote: 'I'm impressed by his interest in physics and the amount that he has learned so far.

'The theory that he's working on involves several of the toughest problems in astrophysics and theoretical physics.

'Anyone who solves these will be in line for a Nobel Prize.'

And it hasn't gone unnoticed by Jake, who added: 'Whenever I try talking about math with anyone in my family they just stare blankly.'

Jake was diagnosed with Aspergers syndrome, a mild form of autism, from an early age.

His parents were worried when he didn't talk until the age of two, suspecting he was educationally abnormal.

It was only as he began to grow up that they realized just how special his gift was.

He would fill up note pads of paper with drawings of complex geometrical shapes and calculations, before picking up felt tip pens and writing equations on windows.

By the age of three he was solving 5,000-piece puzzles and he even studied a state road map, reciting every highway and license plate prefix from memory.

By the age of eight he had left high school and was attending Indiana University-Purdue University Indianapolis advanced astrophysics classes.

By the time Jacob reached the age of 11,he was studying condensed matter physics at Indiana University-Purdue University. 

Jake had embarked on his most ambitious project yet, his own "expanded version of Einstein's theory of relativity".
Not bad for someone who was classified by school special education experts as so severely disabled. 

If Jacob had stayed within the system, their prediction may very well have come true.

     Jake Barnett  At 12 years old Giving A Lecture on TED

                       Jake Barnett Now At 17 Years of Age         

Now aged 17, his love for physics has him currently researching Loop Quantum Gravity and Quantum Foundations at Perimeter Institute for Advanced Theoretical Physics in Waterloo, as a PhD student.

There are many hopeful story's of people such as Jacob Barnett, but there are also many, many more agonizing realities of others diagnosed with Autism whose lives   are limited by whatever it is that destroys their ability to function, whether it be clinically organic, misdiagnosis, treatment related, or a multitude of other causation's.

For them there is no magic cure, no genius who does amazing things with their brain, no way out of the deep darkness that consumes their lives.

Autism today is serially misunderstood and misdiagnosed. 

Misdiagnosis due to ignorance is so prevalent partly because we still don’t really understand autism. 

Autistic people do not seem to have problems perceiving and distinguishing certain types of action, as has been commonly believed, according to a study in the Journal of Neuroscience
Instead, differences seem to arise at the level of executive functions where they try to pay attention to the action and interpret it.
James Cusack, an autistic scientist from the University of Aberdeen, led the study, helping design new types of tests because he felt that the typical tests being used to assess perception differences in autistic people had too many possible unrelated variables.
"When we take account of these other factors properly, the results showed only a slight impairment and this was more of a generalized deficit which might instead be attributed to factors such as the ability to pay attention, rather than autism specifically," he stated in a press release on MedicalXpress. The new tests showed that people with autism are often interpreting some sensory inputs differently.
A co-author on the study suggested that the findings could lead to better approaches to helping people with autism. "Many people with autism are disabled by sensory symptoms," he said. "It is important to know that the brain's sensory systems are functioning well in autism. This suggests that we need to focus upon the way that the brain modulates the way that sensory input is experienced."
In the past two decades, autism has become a catch-all diagnosis for children whose behavior appears antisocial. 

A widely cited 2012 report from the Centers for Disease Control and Prevention found that about one in 88 children in the United States has an autism spectrum disorder

The “spectrum” describes a wide range of conditions, from the milder Aspergers syndrome to the much more severe neurodevelopmental Rett syndrome. 

All are characterized by repetitive behaviors and some degree of impairment in social and communications skills.

While various theories exist, it seems to be genetic in some cases and may be related to synaptic dysfunction, we know little about what causes it and nothing about how to prevent it. 

We also don’t know why some children diagnosed with milder spectrum disorders seem to leave the spectrum entirely in later life, sometimes within only a few years, while others suffer forever in the darkness of their disease. 

Unfortunately, some cases of autism are serious, and the lack of scientific consensus has pushed many parents to desperate measures. 

An infamous (and now discredited) 2001 article linked autism to mercury in vaccines and prompted widespread fears about immunization. 

Old fears die hard. The Internet is awash with non-peer reviewed reports that autism is linked to all kinds of environmental causes. Con artists and unlicensed company's offer dangerous alternative treatments, none of them FDA approved. 

Some desperate parents have turned to chelation therapy, the chemical removal of heavy metals from the body, and hyperbaric oxygen chambers. These treatments recall the barbaric methods once used to treat mental illness, but they also drive home how helpless parents of many autistic children feel.

If left unaddressed, this epidemic of mistreatment and misdiagnosis will be as disastrous for our economy as for our children. 

Autism is expensive and research is grossly underfunded.

According to a study by Michael Ganz at the Harvard School of Public Health, each case of autism carries a social cost of $3.2 million over a lifetime. 

And care is not cheap, sometimes costing $50 thousand or more per year. 

We must recognize that we all know people on and off the spectrum who feel isolated and sometimes act in ways that appear awkward or even antisocial. 

Parents who have children diagnosed within the Autism spectrum need to spend as much loving time interacting with their child, opening up as many new opportunities to experience child hood fun, learning, and stimulation so they can be exposed to the world around them.

The child with the disorder affects the entire nuclear family and becomes a center of attention.

At the same time, parent(s) must perform a very difficult, delicate balancing act when it comes to family dynamics.

In many families that have a child diagnosed with any disorder, not just Autism, there is often a  natural tendency to not pay as much attention to the other "normal" siblings.

These "normal" siblings become "babysitters, cheer leaders", praising every positive thing done by the other child.

They mimic what the parent does, and in doing so, indirectly are seeking the desperate self attention, love they need for themselves.

It is critical that the parent (s) also provide the "normal sibling(s)" with the time for sole attention, experiences that enable them to feel love and secure in the dynamics of the family.

Too often these siblings grow up feeling unloved, insecure, overly anxious, with poor self self esteem. 

Sometimes they even learn to act out, creating problems, in order to get the attention of family as a way to feel loved.

So as difficult as it is for parents to cope with the many stresses of life, it is essential to focus on all your children, including them as individuals within the family.

There are many things parents can do to help children with autism overcome their challenges. 

But it's also important to make sure you get the support you need. 

When you're looking after a child with autism, taking care of yourself is not an act of selfishness, it's a necessity. 

Being emotionally strong allows you to be the best parent you can be to your child in need. 

Regardless of everything said: patience, respect, and a little empathy, not pity, go a long way in helping everyone involved.