Autism One Newsletter

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Proud Member of the Autism Collaboration

Sunday December 14 , 2008

The New Autism One website is LIVE!

Although still under construction, you get see many of the Autism One 2009 Conference speakers and much of the Autism One 2009 Conference schedule and the Birt Center for Autism Law and Advocacy initiative.

Watch McCarthy's 2008 Keynote by selecting 's image on the Autism One home page.

Next week on Autism One Radio www.autismone.org/radio

LIVE -Special Monday, December 15, 10:45 am – 2:00 pm ET

Important Hearing on NY Vaccine Exemption Rights

Assemblyman Marc Alessi's Vaccine Roundtable at Stony Brook University, Stony Brook, NY hosted by Lou Conte, Autism United & Barbara Majeski, NJ Coalition for Vaccination Choice.

The battle in New York to win the right to a philosophical exemption from state vaccine mandates begins in earnest on Monday with a public " roundtable " meeting on Long Island hosted by Assemblyman Marc Alessi, the sponsor of legislation to give New Yorkers philosophical exemption rights, and Assemblyman Gottfried, the chair of the Assembly Health Committee. The entire NY Assembly has been invited!

Speakers for the bill include Barbara Loe Fisher of the National Vaccine Information Center, Larry Palevsky, MD of the Northport Wellness Center, Louise Kuo Habakus of the New Jersey Coalition for Vaccination Choice, and Gilmore of Autism United and the Autism Action Network. Speakers in opposition to the philosophical exemption include Drs. Lee and from the AAP (joint presentation) and Dr. Debra Blog from the NYS DOH. There will be Q & A and public comment (50% of the event).

Dr. Harry Schneider to premiere on Autism One Radio

Wednesday, December 17, 2:00 pm ET / 11:00 am PT

Many of you may know of Dr. Harry Schneider from either the Autism One 2008 Conference (The Discovery of Language-Specific Areas in the Brain of Nonverbal Children with Autism and Practical Application to Treatment: An Emerging Theory) or from his interview with Polly Tommey in The Autism File magazine's USA/Canada September debut issue. Dr. Schneider will premiere his program, Towards Restoring Language, next week on Autism One Radio on the topic of Comorbidities. And " stay tuned " for his article in the January issue of The Autism File entitled New Frontiers in Language Restoration, which will report on encouraging progress (www.autismfile.com).

On the VoiceAmerica Health and Wellness Channel www.health.voiceamerica.com

Tuesday, December 16, 12:00 noon ET / 9:00 am PT

Autism One: A Conversation of Hope: The Relationship of the Gastrointestinal Tract to Autism as a Whole-Body Condition

Teri Arranga's guest, Dr. Wakefield, MB BS FRCS FRCPath, is an academic gastroenterologist who has published over one hundred thirty original scientific articles, book chapters, and invited scientific commentaries. Dr. Wakefield serves as the Executive Director of Thoughtful House Center for Children in Austin, Texas. Thoughtful House aims to provide a research-oriented, integrated biomedical and educational approach. Teri and Dr. Wakefield will discuss a broad range of topics including immunologic, metabolic, and pathologic changes occurring in inflammatory bowel diseases such as autistic enterocolitis, links between intestinal disease and neurologic injury in children, and the possible relationship of these conditions to environmental causes, such as childhood vaccines. Teri will also ask about how to remediate existing damage and prevent damage in the future. Please visit: www.thoughtfulhouse.org

There is still time

To ask personal finance expert Suze Orman about special needs trusts and all sort of questions. What medical bills can you take off on your taxes? Are there any ways to conserve resources through payroll deductions? and Sandy Waters will interview Suze in January. Please send questions to Autism One Radio hosts and Sandy Waters at rwaters@... during December.

From the desk of Chantal Sicile-Kira (chantal@...), author of Autism Life Skills and The Autism File's " Ask Chantal " columnist, who will be moderating this event.

MomsFightingAutism.com Hosts a Free Web Conference Call Sponsored by The Autism File Magazine: How To Prepare Families For The Holidays.

Learn tips on how to create meaningful holidays with children on the spectrum.

Irvine, CA December 9, 2008 -- Momsfightingautism.com, a social network on the internet that connects moms of children with autism, will host a free web conference call about Creating Meaningful Holidays with Children on the Autism Spectrum on Monday, December 15, 2008, from 6pm to 8pm PT.

Those who register at http://www.momsfightingautism.com/teleseminar will receive a free download of an article from the US/Canada premiere issue of The Autism File magazine entitled The Autism Research Institute & Defeat Autism Now!. The Autism File is an international autism magazine available in many major bookstores and by subscription at www.autismfile.com.

In this time of economic hardship, MomsFightingAutism.com and The Autism File wanted to give an early and useful holiday present to those families impacted by autism. Web conference calls and magazines are a great way for the parent and professional who feel isolated or who cannot make it to conferences to stay connected.

The speaker on December 15th will be Lieberman, MSW, LCSW, a psychotherapist in private practice in Oregon with over 30 years experience, and author of A Stranger Among Us: a comprehensive guide to hiring one-to-one providers for children and young adults with disabilities. Mrs. Lieberman and her husband are blessed with a 20-year-old son, Jordan, who has autism. “With the holidays fast approaching, parents with children on the spectrum will face unique challenges and pressures – including how to balance everyone's needs,” explained .

This conference call is part of an interactive series that Ernest Priestly, founder of MomsfightingAutism.com, has been providing and will continue through the new year. Listeners on the webcasts are able to post a question live while the speaker is presenting. “This interactivity always brings out more in the speaker and moderator,” said Ernest “It helps those who are listening and searching for answers to get the information they really need.”

A VERY SPECIAL REQUEST FROM A VERY SPECIAL GIRL

December 9, 2008

Dear Patients of Dr. Bradstreet’s,

My name is Mancini. I am 10 yrs old. I have been a patient of Dr. Bradstreet’s since I was

2 ½. I used to be really sick all the time. Dr. Bradstreet helped me get better.

Last May my mom spoke with Dr. Bradstreet at the Autism One conference in Chicago about how they worked together as a team to help me. I introduced him on stage. It was really cool. He rocks.

This year Mommy is going to speak with Dr. Bradstreet again. I want to give Dr. Bradstreet a special gift from all of us kids. If you want to be part of this gift and thank Dr. Bradstreet along with me, please email me your picture to jdmafm@.... I want to give Dr. Bradstreet a digital frame with all of our pictures. He really deserves it.

I hope that you will be able to be part of this gift. Dr. B. works super hard and is always there for us. He even went to Paris and Norway to help the kids with autism there. Dr. Bradstreet is totally awesome.

Please send the pictures by 2/14/2009.

I love Dr. Bradstreet and I think he is the coolest doctor ever. He will always be in my life.

Have an awesome Holiday!!!

Hugs,

Mancini

A gift that lasts long past the new year...and years to come.

With a gift of The Autism File magazine, you give information that can positively impact the lives of children and families -- information for effective help towards healing. Some of the articles in the January 2009 issue include: Healing the Gut in Teenagers...and Beyond, by Pam Ferro, RN; My Daughter Hannah Poling: Personal Perspectives & Clues to a Larger Puzzle, by Terry Poling, RN, JD; The Science Behind Treatment Strategies, by Mumper, MD; Toward Community Integration: Fulfillment of the human rights of all people, by W. Bauer; Brain reorganization in developmental disorders: Parallels between dyslexia and autism, by Frye, MD, PhD; and Down syndrome and autism, by Laurette Janak. Please visit: www.autismfile.com.

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.”

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.”

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 Speaks

To 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 Marcus

Let’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 Together

Bob 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 Courts

As 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 Hurricane

You 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 End

Look 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.

Our Best,

Ed and Teri Arranga

714.680.0792

http://AutismOne.org

earranga@...

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