Why Autism Speaks Does Not Help Our Children

[Guest guest]

Editorial – Edmund C. Arranga

Why Autism Speaks Does Not Help Our ChildrenAbe Lincoln was once asked if a horse’s tail is called a leg how many legs does a horse have. Lincoln replied “four – calling a tail a leg does not make it a leg.â€

I am heartened by the honest critique regarding Autism Speaks and some of the light it sheds on the reasons for the great divide that exists between Autism Speaks and the community at large.

At its heart Autism Speaks is a brilliant business plan – big on hype and absent all else. And like many who believed it would evolve and change over time and recognize the causes and effects of autism, I waited with baited breath for Autism Speaks to “get it.â€

Both of my sons have benefited enormously by the movement begun by Dr. Rimland decades ago, as have thousands of other children. Dr. Rimland attributed the rise in autism to the rise in vaccines and launched Defeat Autism Now! to treat autism as a vaccine injury and fund further research.

Many of us were skeptical at first – no, no, that couldn’t be – our doctors and government declared vaccines as safe as mother’s milk. Then we began, in many ways, the hardest part of the journey: to discover we were lied to.

Some parents get it right away because their children regress within hours or days. It took me almost two years to do the research and connect the dots to understand the extent vaccines had injured my boys. The trajectory involving Autism Speaks was very similar.

With Autism Speaks, however, the honeymoon period was gone within a year. It was evident their plans did not include educating parents and doctors on the benefits of biomedical treatments, or the dangers of vaccines and other environmental triggers, or funding research that mattered, or help moms looking for answers, or in developing a grassroots support network that did not exploit parents.

Understanding Autism SpeaksTo understand the whys and wherefores of Autism Speaks one must understand one man – Bernard Marcus – whose vision is responsible for its philosophical foundation and consequently its actions and motives.

In February 2005 the s, Bob and , launched Autism Speaks. Marcus had heard about the ’s grandson and his diagnosis of autism and urgently contacted them asking to meet. Bob, the president of NBC at the time, was due to leave the country in a few days on business and demurred.

Marcus is a man used to getting his way and with the mention of $25 million dollars to help fund the fledgling effort a meeting was hastily arranged. On February 25, 2005 the s appeared on “The Today Show†to launch Autism Speaks trumpeting the Marcus Foundation’s pledge of $25 million.

It seemed for a fleeting moment the autism community had its benefactor – a knight in shining armor with the resources to begin the monumental task of changing all that was wrong about autism and to support all that was right the community had so painstakingly discovered over the previous 40 years. But it didn’t happen and never will.

Bernard MarcusLet’s meet Bernie Marcus. He is a man of enormous influence and wealth. As the co-founder of Home Depot Forbes ranks him #239 in the Top 400 and estimates his net worth at more than $2 billion dollars.

An entrepreneur of immense talent Marcus is a man not to be trifled with. But trifled with he felt when faced with workmen compensation claims and oversight and regulatory measures. J. Donohue, who ran the American Truckers Association visited Marcus in 2000 and was stunned by Marcus’ outrage and complaints of getting hit with a new lawsuit every day.

Marcus felt he was right and the system was wrong. Compensation claims ate away at profits and other measures imposed by government stymied his “free market†philosophy. It was time to strike back.

Limiting the rights of workers meant limiting their access to the courts and fundamentally changing their stewardship. “Tort reform†was the rallying cry and Marcus with his fortune began his crusade to change the landscape of the legal system.

Working through a number of pro-business organizations, most notably the U.S. Chamber of Commerce and Institute for Legal Reform, Marcus donated and raised hundreds of millions of dollars for his favorite cause – protecting his own financial interests.

Marcus’ initiatives were highly successful. With his war chest and business contributors, including Wal-Mart and AIG fewer and fewer cases were brought to court and fewer and fewer were decided in favor of the plaintiff. Business was by all intent and purposes unregulated to pursue their American Dream regardless of its impact on the health and welfare of the American public.

Putting the Pieces TogetherBob was the president of NBC and is still currently the vice-chairman of GE. His rolodex includes every mayor NBC star for the last twenty years – a ready-made network waiting to be tapped for public relations and fundraising efforts.

is business-savvy and a good company man. Better still, due to his fiduciary duties he was not in a position to publicly speak out against many of the businesses General Electric owns and partners with that support vaccines – the perfect beard for Marcus.

The CourtsAs it stands parents who suspect vaccines caused their child’s regression into autism are funneled into the vaccine court, a decidedly pro-vaccine court with limited powers of discovery. Parents who bypass or opt-out of the vaccine court face Daubert and -Frye chokepoints.

Both are motions, raised before or during a trial, to exclude the presentation of “unqualified†evidence to a jury. A vaccine-injury civil claim is filed in the state or federal courts. Twenty doctors are lined up to testify. It appears to be a slam-dunk.

Instead, the judge throws out the case out before it ever gets to trial when the defense raises a -Frye or Daubert motion. The judge determines there is not enough “evidence†to support a claim that vaccines were responsible in causing your child’s autism (and by evidence one of the key factors taken into account by the court are peer-reviewed publications).

Autism as a Looming HurricaneYou are a billionaire with a grandiose sense of your own worth. You name your foundation in honor of yourself and bask in the admiration of the high and the mighty and the weak and the needy. You are a living legacy working with the rich and powerful to ensure your rightful place in history.

Storm clouds are on the horizon. If autism was a hurricane it could be categorized as a potential super typhoon leveling all your “good†work in the wake of its destructive path.

Your definition of the great and the good could very soon be under attack if the public learns the major cause of autism is vaccines and your efforts have largely limited parent’s right to access, redress and by extension educate the public and end the epidemic. Your decade long work to shape the courts in your own self-interest could be swept away as suddenly as a typhoon snaps a sapling.

From prominent to pariah in the blink of an eye is not how you plan to be remembered. Your personal philosophy of “unfettered and free-wheeling business as usual†could all be undone by the populace.

You hear about the ’s grandson being diagnosed with autism and plans to launch Autism Speaks. At $25 million it’s a steal. The property is worth at least $100 million.

Gala celebrations, celebrities everywhere, and “awareness†touted as the beginning and the end is the defining DNA of the nascent organization.

Above all else do not fund studies that would put Daubert and -Frye in jeopardy. Instead focus on genetic studies that blame the mothers and fathers.

The EndLook in the mirror and again admire the role you have played in shaping the autism community, much as you did the retail and legal landscapes. But calling Autism Speaks an autism organization does not make it one.

There is not enough cement and rebar and flood equipment in all your Home Depots to keep your house of cards safe from the coming tsunami.

[Guest guest]

Editorial – Edmund C. Arranga

Why Autism Speaks Does Not Help Our ChildrenAbe Lincoln was once asked if a horse’s tail is called a leg how many legs does a horse have. Lincoln replied “four – calling a tail a leg does not make it a leg.â€

>>Should have made a note Ed Arrange is a parent of affected child and president of Autism One in the USA

Mandi x

[Guest guest]

is Terri Arranga US editor of autism file?

>>Yes, husband and wife team

MAndi x

[Guest guest]

is Terri Arranga US editor of autism file?

>

>

> In a message dated 16/01/2009 12:54:17 GMT Standard Time,

Mum231ASD@...

> writes:

>

> Editorial †" Edmund C. Arranga

>

> Why Autism Speaks Does Not Help Our Children

> Abe Lincoln was once asked if a horse’s tail is called a leg how

many legs

> does a horse have. Lincoln replied “four †" calling a tail a

leg does not make

> it a leg.â€

>

>

>

> >>Should have made a note Ed Arrange is a parent of affected child

and

> president of Autism One in the USA

>

> Mandi x

>