AUTISM: THE REAL STORY NEEDS TO BE TOLD

Wow, I couldn’t have said it better myself.  Families affected by Autism need to know not to just ‘go with the flow’-the behavioral therapy route…it’s not enough.  Autism is treatable.  Find a good DAN doctor, research, get on Yahoo Groups, search the internet/books.  I know it’s a full time job, but there are answers out there!

AUTISM: THE REAL STORY NEEDS TO BE TOLD

By Marcia Hinds with Sian McLean

  Since April is Autism awareness month, numerous articles are being published and aired about Autism.  While I am thankful for the campaign for Autism awareness, it’s just not enough.  So often, the information is incomplete, off-target, misleading.  There are far too many stories about how diligent parents have ‘triumphed’ over Autism and how ‘brave and courageous’ children are living heroically with Autism.  When in reality Autism is destroying our children’s lives and fragmenting families.

This is a diagnosis without a happy ending and it is about time the media said that.  This story is real, alarming and affects all of us.  The solution to the Autism problem seems complicated, but in reality is so simple.  We need to put an end to this disease that is taking our children and robbing them of happy and productive lives.  Because of the lack of proper medical treatment, parents and children are never ‘done’ dealing with Autism.  Your child is born Autistic, lives Autistic and dies Autistic. That’s the reality.  And it is because we are doing the wrong thing. Want to end Autism? …. Replace your child’s psychiatrist with an immunologist.

Recently the Center for Disease Control (CDC) reported “Autism is on the rise. …1 in 88 Kids has Autism and say that on average 1 in 54 boys was diagnosed with Autism.”  And the news agencies add to these findings by reporting that Autism is sharply rising in epidemic proportions, “Utah and New Jersey Swamped with Autism, 1 in 12 Boys.”

The most prevalent explanation for this increase in numbers is better diagnostic techniques and more awareness. But this just does not ring true.  How can anyone believe so many of these Autistic children were just not diagnosed properly?  That’s a huge number of kids.  No one can MISS a child with Autism. They are hard to live with at home and frustrating to teach at school. They have epic meltdowns in the grocery store, as well as, throw award-winning tantrums in restaurants.  They also say and do strange things that make others feel very uncomfortable. Or some maybe never say anything at all, including “I love you.”

Doesn’t anyone want to know the real story or the truth about Autism? 

It is long past time to retire the antiquated belief that Autism is solely a psychiatric and developmental disorder.  My truth about Autism is that it is a complex medical condition caused (in most part) by an immune system that is not working properly.  Autism is, in fact, treatable.  No parent should ever accept that their child cannot be helped.  My son, Ryan, is my living proof children can get better.  He was given a life sentence filled with no hope when he was only four years old.  A psychiatrist, a leading authority on Autism, said Ryan would never be okay and most likely end up in an institution or group home.  She was wrong.  The only institution Ryan ever attended was the university that awarded him an academic scholarship.  He graduated magna cum laude with a degree in mechanical engineering.

He does all the things “experts” said would never happen.  Ryan pledged and was accepted into Sigma Chi Fraternity and was president of the Jewish Student Association.  After graduation, he continued on for a master’s degree; NASA picked up most of the tab and awarded him a paid summer internship.  But more important than all his academic accomplishments, Ryan was just your typical college student who drank an occasional beer, went on dates, stayed out too late with friends and then slept through eight o’clock classes.  I couldn’t be more proud.

I never thought these things were possible when he was little.  Unbelievable as it seems, this is the same child who wanted to spend every day, all day, plugging a portable radio into every outlet in the house.  The difference for Ryan is that his broken immune system was treated medically.  But this wasn’t an easy fix or an instant cure.  It took years for him to learn everything he missed when he was so sick.

If the term “Autism” never existed or was not defined – and thus confined – as a psychiatric problem maybe our children would be getting the medical treatment they deserve.  If increasing numbers of children showed-up in schools without speech, lost in their own worlds, having unexplained seizures and constant GI distress, would we be standing by allowing it to happen?  Or would we be more like the mothers during the polio epidemic demanding answers and solutions?

Maybe we need to do what Dr Michael Goldberg says and just stop calling it Autism. That way, the medical community might stop treating it like a debilitating psychiatric disorder without any hope for recovery and start treating our children medically.  Only then, will the rehabilitation and educational programs we spend millions of dollars on actually be effective and allow children to lead full and productive lives.

Dr. Goldberg once told me that the medical community only began to re-evaluate its treatment approach to polio when “mama bears” began to insist, demand, require and force them.  While the incidence of polio was only one in 1,500 for children (instead of the 1 in 88 for Autism); the public outcry from mothers demanded that the medical community act.  He is still waiting for that to happen with Autism. It is up to us parents to demand answers and treatment for our children.  We need to learn to growl like our grandmothers did, because there are too many children NOT getting better every day.

Contact info for Marcia Hinds:

 hindssite@… or 805 497-8202.

See http://www.cdc.gov/ncbddd/autism/data.html for more statistics on Autism by the CDC

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