Autism One Special Newsletter

[Guest guest]

Friday, December 8, 2006

Dear Friends and Colleagues -

AUTISM ONE NEWSLETTER SPECIAL EDITION

Combating Autism Act of 2006 passes House and Senate

Landmark legislation offers new hope to victims and families of rapidly growing epidemic.

Washington, DC – S.843, the Combating Autism Act of 2006 passed both house of Congress yesterday. The legislation offers up to $860 million in funding for autism research, diagnosis, and identification of effective treatments for this devastating disorder. Once passed into law, this legislation will expand early screening and diagnosis, promote critical early intervention, and expand research efforts on autism in the arenas of genetics, biomedical treatment, and potential environmental causes.

“This is a day in history that will lead to changing the lives of so many who have endured life with autism, providing hope and possibly leading to prevention. It was a momentous occasion as it was the result of the entire autism community aligning themselves in a unified effort” said Jim Donnelly, of Autism One and the Fuzz Foundation for Autism. The bill also offers a chance for parents’ involvement in the planning process. It establishes greater community involvement by creating additional committee membership for advocates and others living with autism.

The bill next moves to President Bush’s desk where it is expected to be signed into law next week.

Organizations supporting the legislation include:

Autism One

Autism Society of America

Autism Speaks

COSAC

Cure Autism Now

Dan Marino Foundation

Doug Flutie, Jr. Foundation

First Signs

Generation Rescue

The Help Group

National Autism Association

Organization for Autism Research

S.A.F.E. Inc.

Southwest Autism Research & Resource Center

SafeMinds

TalkAutism

Unlocking Autism

US Autism and Asperger Association

Please see Congressman ph Barton’s report language introducing the bill at the end of the newsletter.

MEDIA SPECIAL

Saturday, December 9, 6:00 am CT

and Sandy Waters, program hosts of “The Candy Store” on Autism One Radio are going to be interviewed on the Emmy award winning show People to People on WGN-TV, Saturday, December 9 at 6am CT. WGN-TV is part of the CW Network, seen nationally.

Congratulations to Bob and Sandy who are advancing the cause of autism with their inspirational music!

AUTISM ONE RADIO

We are planning a tribute to Dr. Bernard Rimland. If you would like to be involved please contact me at earranga@.... or call 714.680.0792.

Coming up on Autism One Radio

Saturday, December 9, 3:00 pm ET

En français

Françoise Ayzac: Synergies: qui TEDera?

La Futuroschool: une structure ABA novatrice à Paris

Karina Alt est administratrice de la Futuroschool, créée par des parents de l'association Léa pour Samy pour accompagner la scolarisation d'enfants autistes en milieu ordinaire. Le financement, le mode de fonctionnement, les projets de cette structure novatrice en France.

Topic: The Futuroschool of Paris: an innovative ABA concept in France.

Guest: Karina Alt is one of the directors of the Futuroschool, which was created by the Lea pour Samy organization in order to sustain the mainstreaming of autistic children. Financial aspects, operation and projects of an innovative concept.

Monday, December 11, 10:00 am ET

and Sandy Waters: The Candy Store

Guest: Arthur ez, Grammy award country singer & performer, who supports the children's cause.

Monday, December 11, 12:00 pm ET

Autism One Radio Multimedia SPECIAL VIDEO:

Stan Kurtz: From the Children's Corner: Research, Reform, Recoveries

Topic: Are our kids tripping? Recorded on film, a non-drug using adult with a fungal overgrowth goes into a full blown LSD-type altered state on camera after a single dose of MB12. This ground-breaking video may provide direct evidence that autism symptoms in some children may be caused by oily fungal toxins needing to be methylated out of fatty tissue.

Tuesday, December 12, 9:00 pm ET

M. Kennedy, Esq.: The Advocate

Guest: Allan Bergman, President and CEO of the Anixter Center in Chicago. Anixter Center assists people with disabilities to live and work successfully in the community, provides high-quality vocational, residential and educational options, and advocates for the rights of people with disabilities to be full and equal members of the community. Prior to his appointment at Anixter in 2004, Allan was Director of Government Relations and State-Federal Relations for United Cerebral Palsy Associations in DC from 1986-1998 and as the CEO of the Brain Injury Association of America in DC from 1998-2004.

Friday, December 15, 11:00 am ET

Debut: Tami Duncan: The Lyme and Autism Connection

It is estimated that up to 90% of children with autism are also infected with Lyme Disease. The International Lyme and Associated Disease Society states that Autism/ADHD is one of the disorders that Lyme Disease can mimic. This program addresses testing and treatment options.

Guest: Warren Levin, MD, is recognized as the " East Coast Dean of Alternative Medicine. " He was one of the first practitioners to identify Lyme Induced Autism and has been treating children with attention disorders, learning disabilities, asthma, and ASD's. He was also the earliest practitioner of chelation therapy in NY, beginning 1973.

COMBATING AUTISM ACT

We stand at a peculiar point in time with much to look back on and perhaps much to look forward to. The long first chapter taking more than sixty years to write; the second chapter only beginning. The final chapter when autism is eradicated and all children recovered may be tilting at windmills, but we should tilt at windmills.

Sometimes the memories are a bit too fresh. Earlier efforts, a scant six years ago, when pleas to Congress fell on deaf ears, when mention of autism brought a look of bewilderment followed by a stifled yawn and studied avoidance of eye contact and when trips to D.C. was a community effort are going to change drastically with the passage of the Combating Autism Act. A billion dollars draws interest from a lot of Elmer Gantry’s.

There is much to be grateful for, however. The lessons we learned came at a high cost. We are all accidental autism advocates.

Passage of the Combating Autism Act resonates deeply. It acknowledges at the highest reaches of government a problem of cataclysmic proportions, while admitting the need for Congressional oversight.

All of your voices have been heard. What kind of gifted chapter arises next is still up to all of us.

Please let me know if you have any questions, comments, suggestions, or ideas. Thank you.

My Best,

Ed Arranga

714.680.0792

http://AutismOne.org

earranga@...

Statement on

S. 843 as Amended, the “Combating Autism Act”

Chairman ph Barton

Energy and Commerce Committee

December 6, 2006

Mr. Speaker,

I rise today in support of the bill S.843 as amended, also known as the Combating Autism Act. This legislation takes several important steps intended to improve and intensify the federal response to the problem of autism in the United States.

As many of my colleagues are aware, autism is a brain disorder that appears in childhood and persists throughout a person's life. Autism affects crucial areas of a person's development, including communication, social interaction, and creativity. Recent studies estimate that autism affects 3.4 out of every 1,000 children ages 3 through 10. While autism varies widely in its symptoms and severity, early diagnosis and treatment can help autistic people to live independent and productive lives.

Today, little is understood about the causes and mechanisms of autism. Many studies have been conducted into researching possible genetic and environmental causes of autism, and scientists are learning more about this disorder and how its effects can be lessened or eliminated. But without question, more work needs to be done to pinpoint the true causes of autism and to come up with a cure.

This legislation contains provisions designed to intensify and coordinate the federal response to autism. It instructs the Centers for Disease Control and Prevention to expand and update its efforts to monitor autism incidence and prevalence around the country. The legislation also requires the CDC to educate parents and health care providers about the early warning signs of autism as well as the need for early and regular screenings.

Another section of the bill addresses autism research conducted at the National Institutes of Health. Building on provisions contained in the Children's Health Act of 2000, the bill requires the Director of NIH to expand and intensify autism-related research, including research into possible environmental causes of autism. The expansion and intensification will include research to be conducted at the National Institute of Mental Health, the National Institute of Environmental Health Sciences, and a number of other institutes at NIH. The National Institute of Environmental Health Sciences already has two centers, one located at the University of California at and one at the Wood Medical School in New Jersey, funded to study possible environmental causes of autism. In conjunction with the bill’s authorizations of appropriations, these provisions will ensure the continuation and intensification of crucial research at NIEHS so that it is able to conduct all necessary research to determine the environmental factors in Autism.

With respect to possible environmental or external causes of autism, some have suggested a link exists between autism and childhood vaccines. In the past several years, several major epidemiological studies have been conducted to look into the question of whether vaccines cause autism. Examining the published studies, the non-partisan Institute of Medicine has concluded that the weight of the available evidence favors rejection of a causal relationship between vaccines and autism. However, I recognize that there is much that we do not know about the biological pathways and origins of this disorder, and that further investigation into all possible causes of autism is needed.

This legislation is not designed to predetermine the outcome of scientific research. Rather, the legislation rightfully calls for renewed efforts to study all possible causes of autism—including vaccines and other environmental causes. Simply put, we should leave no stone unturned in our efforts to find a cure, whether it means exploring possible environmental factors, paternal age, genetic factors, or any other factors that may hold answers. Perhaps further inquiry will show that it is not a single factor but a combination of two or more factors that cause what we know as autism. For example, a child might have a genetic predisposition that is triggered by an external, environmental factor that causes autism. The important thing to understand is that there are no preconceived notions contained in this bill—the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.

During the House consideration of the NIH reauthorization bill, we found that the NIH has created centers of excellence to promote collaborative research into a particular field. A center of excellence is a designated entity, such as a university or a hospital, that receives NIH funding to study a particular research area. At their best, centers of excellence can foster collaboration and communication between scientists in a concentrated research area that can benefit from such an environment. However, the proliferation of centers of excellence, especially congressionally-mandated centers of excellence, is a concern because it diverts precious resources away from other promising avenues of research that may be worthwhile. If Congress were to mandate new centers of excellence without sound scientific justification, it could greatly fragment NIH's research budget, increase administrative and overhead costs, and slow down important medical and scientific breakthroughs.

The amended bill before us today does not create new centers of excellence, nor does it remove any centers. There were five autism-related centers of excellence mandated in the Children's Health Act of 2000. In the intervening years, NIH created the five statutorily required centers of excellence that study various aspects of autism. NIH then went on to create an estimated 21 to 28 centers of excellence dealing with various aspects of autism research, including research into possible environmental causes. Rather than mandating in statute the creation of a specified number of additional centers on top of those centers already in existence, this bill lays the groundwork for effective congressional oversight of centers of excellence. It requires the Director of NIH to submit a report to Congress detailing the effectiveness of centers of excellence across the NIH and how they can be improved. The bill also gives the Director of NIH the explicit authority to consolidate centers of excellence if it would lead to improved program efficiencies and outcomes.

Next, the amended bill expands and reauthorizes an existing Interagency Autism Coordinating Committee, or IACC. The coordinating committee will be made up of relevant government officials, experts, and parents and families of those suffering from autism. The committee's far-reaching mandate will be to compose and annually report to Congress on a strategic plan for federal Autism activities and to make important recommendations to both Congress and the executive branch on ways to better coordinate and conduct federal autism-related activities. Further, this legislation increases the amount of public participation on the IACC from two individuals to at least six. In addition, the IACC has been tasked with making recommendations to the Secretary regarding the public participation in decisions relating to autism. For instance, the committee notes that the IACC may recommend providing other formal mechanisms, such as an Autism Advisory Board, to provide public feedback and interaction. Further, the Secretary may opt to provide such a mechanism under existing statutory authority, without the recommendation of the IACC. Public participation, especially among the parents and families of those affected by autism, is necessary to emphasize the human side of autism research and to ensure that federal resources are used wisely.

This legislation takes several important steps forward in continuing the fight against autism, and I support its passage. Should the Senate also take up and pass the bipartisan NIH reauthorization bill overwhelmingly passed by the House earlier this year, Congress and the public will benefit from increased transparency and accountability at NIH that will benefit research into all diseases, including autism. I urge swift passage of both bills so we can get them to the President's desk before the end of this Congress.

At this time, I'd like to thank the sponsors of both the House and Senate bills who have worked tirelessly on this issue as well as the members of the autism advocacy community who have contributed constructive ideas and insights into this legislation.

With that Mr. Speaker, I urge my colleagues to support the bill and reserve the balance of my time.

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