________________________________________________________________
Monday,
March 15,
2010
Vol. 14 No. 25
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Autism
Calendar Deadline for April is March 25
NEWS
Court Says Thimerosal Did Not Cause Autism
Statement The DHHS on The Decisions Of The U.S. Court Of Federal Claims In The Omnibus Autism Proceeding
RESEARCH
Digestive Enzyme Supplementation for Autism Spectrum Disorders
Research Study: Autism Spectrum Disorders and the Family
New Genetic Test for Some Autism Could Help Improve Diagnosis and Treatments
PEOPLE
In Court, The Multi-Millionaire Accused Of Murdering Her Autistic Son
FINANCES
Federal Cash Could Help SC Lawmakers Avoid Cuts
COMMENTARY
The Jury Is Still Out On Vaccines & Autism
Vaccine Court Denies Justice to Vaccine-Injured Children Take Action!
LETTERS
Doctors Defended
Let Your Voice Be Heart. Please Take the Autism Survey
NEWS
Court Says Thimerosal Did Not Cause AutismBy Randolph E. Schmid, AP. is.gd/aF3IM
| The vaccine additive thimerosal is not to blame for autism, a special federal court ruled Friday in a long-running battle by parents convinced | 
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While expressing sympathy for the parents involved in the emotionally charged cases, the court concluded they had failed to show a connection between the mercury-containing preservative and autism.
"Such families must cope every day with tremendous challenges in caring for their autistic children, and all are deserving of sympathy and admiration," special master George Hastings Jr. wrote.
But, he added, Congress designed the victim compensation program only for families whose injuries or deaths can be shown to be linked to a vaccine and that has not been done in this case.
The ruling came in the so-called vaccine court, a special branch of the U.S. Court of Federal Claims established to handle claims of injury from vaccines. It can be appealed in federal court.
The parents presented expert witnesses who argued mercury can have a variety of effects on the brain, but the ruling said none of them offered opinions on the cause of autism in the three specific cases argued. They testified that mercury can affect a number of biological processes, including abnormal metabolism in children.
Special master Denise K. Vowell noted that in order to succeed in their action, the parents would have to show "the exquisitely small amounts of mercury" that reach the brain from vaccines can produce devastating effects that far larger amounts ... from other sources do not. The ruling said the parents were arguing that the effects from mercury in vaccines differ from mercury's known effects on the brain. Vowell concluded that the parents had failed to establish that their child's condition was caused or aggravated by mercury from vaccines.
Friday's decision that autism is not caused by thimerosal alone follows a parallel ruling in 2009 that autism is not caused by the combination of vaccines with thimerosal and other vaccines.
The cases had been divided into three theories about a vaccine-autism relationship for the court to consider. The 2009 ruling rejected a theory that thimerasol can cause autism when combined with the measles-mumps-rubella vaccine. After that, a theory that certain vaccines alone cause autism was dropped. Friday's decision covers the last of the three theories, that thimerosal-containing vaccines alone can cause autism.
The ruling doesn't necessarily mean an end to the dispute, however, with appeals to other courts available.
The new ruling was welcomed by Dr. Paul Offit of Children's Hospital of Philadelphia, who said the autism theory had "already had its day in science court and failed to hold up."
But the controversy has cast a pall over vaccines, causing some parents to avoid them, he noted, "it's very hard to unscare people after you have scared them."
On the other side of the issue, a group backing the parents' theory charged that the vaccine court was more interested in government policy than protecting children.
"The deck is stacked against families in vaccine court. Government attorneys defend a government program, using government-funded science, before government judges," Rebecca Estepp, of the Coalition for Vaccine Safety said in a statement.
SafeMinds, another group supporting the parents, expressed disappointment at the new ruling.
"The denial of reasonable compensation to families was based on inadequate vaccine safety science and poorly designed and highly controversial epidemiology," the goup said.
The advocacy group Autism Speaks said "the proven benefits of vaccinating a child to protect them against serious diseases far outweigh the hypothesized risk that vaccinations might cause autism. Thus, we strongly encourage parents to vaccinate their children to protect them from serious childhood diseases."
However, while research has found no overall connection between autism and vaccines, the group said it would back research to determine if some individuals might be at increased risk because of genetic or medical conditions.
Meanwhile, in reaction to the concerns of parents, thimerosal has been removed from most vaccines in the United States.
In Friday's action the court ruled in three different cases, each concluding that the preservative has no connection to autism.
The trio of rulings can offer reassurance to parents scared about vaccinating their babies because of a small but vocal anti-vaccine movement. Some vaccine-preventable diseases, including measles, are on the rise.
The U.S. Court of Claims is different from many other courts: The families involved didn't have to prove the inoculations definitely caused the complex neurological disorder, just that they probably did.
More than 5,500 claims have been filed by families seeking compensation through the government's Vaccine Injury Compensation Program, and the rulings dealt with test cases to settle which if any claims had merit.
Autism is best known for impairing a child's ability to communicate and interact. Recent data suggest a 10-fold increase in autism rates over the past decade, although it's unclear how much of the surge reflects better diagnosis.
Worry about a vaccine link first arose in 1998 when a British physician, Dr. Andrew Wakefield, published a medical journal article linking a particular type of autism and bowel disease to the measles vaccine. The study was later discredited.
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Statement The DHHS on The Decisions Of The U.S. Court Of Federal Claims In The Omnibus Autism Proceeding
is.gd/aIuwt
As these latest cases illustrated, there's no doubt that autism and autism spectrum disorders place a heavy burden on many families. We know that autism and related disorders are conditions that present many special challenges to all families touched by these disorders. That is why the U.S. Department of Health and Human Services provides services to families with family members with autism spectrum disorder and continues to support research to better understand risk factors and causes of autism spectrum disorders and develop more effective methods of treatment.
The medical and scientific communities have carefully and thoroughly reviewed the evidence concerning the theories that vaccines can cause autism and have found no association between vaccines and autism.
Vaccines save lives. The safety and efficacy of vaccines-and the public's confidence in them-is one of our highest priorities. If parents have questions or concerns about childhood vaccines, they should talk with their child's health care provider.
More information about autism and autism spectrum disorders can be found at www.hhs.gov/autism.
See Also:
'Vaccines Court' Rejects Mercury-Autism Link In 3 Test Cases
LA Times
is.gd/af4gd
See COMMENTARY below.
RESEARCH
Digestive Enzyme Supplementation for Autism Spectrum Disorders:A Double-Blind Randomized Controlled Trial.
Enzyme didn't help
Munasinghe SA, Oliff C, Finn J, Wray JA. J Autism Dev Disord. 2010 Mar 5.
State Child Development Centre, PO Box 510, West Perth, WA, 6872, Australia, munass01@student.uwa.edu.au.
To examine the effects of a digestive enzyme supplement in improving expressive language, behaviour and other symptoms in children with Autism Spectrum Disorder. Randomized, double-blind placebo-controlled trial using crossover design over 6 months for 43 children, aged 3-8 years. Outcome measurement tools included monthly Global Behaviour Rating Scales, Additional Rating Scales of other symptoms by parents and therapists, and monthly completion of the Rescorla Language Development Survey. Compared with placebo, treatment with enzyme was not associated with clinically significant improvement in behaviour, food variety, gastrointestinal symptoms, sleep quality, engagement with therapist, or the Language Development Survey Vocabulary or Sentence Complexity Scores. A small statistically significant improvement on enzyme therapy was seen for the food variety scores. No clinically significant effect improvement of autism symptoms with enzyme use was shown with this trial, however, possible effects on improvement in food variety warrants further detailed investigation.
PMID: 20204691
[PubMed - as supplied by publisher]
Research Study: Autism Spectrum Disorders and the Family
The Institute for Child Development is conducting a research study to understand the daily lives and needs of mothers and siblings of children with autism spectrum disorders (ASD). The study focuses on maternal stress and sibling responsibility with the ultimate goal of improving services to better meet the needs of family members.Eligible Participants: Mothers who are at least 18 years of age and who have a child with a diagnosis of Autism, PDD-NOS or Aspergers Disorder between the ages of 3 and 12.
Study Participation: If you decide to participate you will be asked to fill out several important questionnaires about yourself, your child with an ASD and a typically developing sibling (if any). While questionnaires are expected to take approximately 1.5-2 hours to complete, they do not have to be completed all at once and can be completed in your home.
Individuals who participate in the current study will be invited to attend a stress management workshop after they have completed the study. Participants will also be given the option to receive a final report of the results of the study. Participants who provide information about a typically developing sibling will have the option of receiving a summary of the results of a brief behavioral screening questionnaire if results indicate elevated levels of problematic behavior.
If you are interested in participating in this study please contact Julia Barnes or Lauren Fishbein at 877-788-4ASD or e-mail autism@binghamton.edu. You can also visit icd.binghamton.edu/asdfamily.html for more information about participating.
This research has been approved by the Binghamton University Human Subjects Research Review Committee.
New Genetic Test for Some Autism Could Help Improve Diagnosis and Treatments
By Denise Reynolds RD emaxhealth.com is.gd/aIqfy| Genetic cause is thought to be a factor in about 15% of autism spectrum disorder (ASD) patients. A genetic test for autism currently used as a secondary approach may be better able to pick out the underlying causes for the condition more than that of a first-tier screening test. | 
|
Wu said the tests currently used as a first-tier test for autism may only detect 2 percent of the genetic abnormalities that could be behind the development of autism. Linking an additional 5 percent of these cases to a genetic cause would mean an explanation for 2,000 more cases of autism each year.
The other two genetic tests for autism include G-banded karyotype testing and Fragile X testing. Karyotype tests, available since the 1960s, identify chromosomal abnormalities associated with autism in about 2.2% of patients. The Fragile X genetic mutation is found in 0.46% of cases.
CMA tests two known chromosome locations - chromosome 16 (16p11.2) and chromosome 15 (15q13.2q13.3) which accounted for 17 percent of abnormal findings. Both chromosome abnormalities were initially linked with ASDs by Children's Hospital Boston and collaborators in The New England Journal of Medicine and the Journal of Medical Genetics in 2008. Children's Hospital is one of the few centers around the country that now offers specific tests targeting both of these locations.
The test is not intended to replace current screening tests, but complement them in an overall comprehensive care plan. The detection of more genes associated with autism could bring a better understanding of the cause of autism spectrum disorders and could lead to better treatments tailored to each patient.
Dr. Nancy Minshew, professor of psychiatry and neurology and director of the University of Pittsburgh's Autism Center of Excellence and not involved in the study, said the test could also help parents of an autistic child determine the risk of having another child with autism in the future. If tests point to a chromosomal abnormality, parents are usually offered testing to determine if the deletion or duplication occurred by chance or if the parents have a higher chance of giving birth to another child with autism.
Unfortunately, because the current guidelines do not list CMA as a first-tier treatment, many insurance companies will not reimburse for the additional screening, which can cost a couple thousand dollars.
The study will be published in the April issue of Pediatrics, but is available online March 15.
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PEOPLE
In Court, The Multi-Millionaire Accused Of Murdering Her Autistic SonBy UK Mail. is.gd/aItE0
|
A wealthy New York socialite accused of
killing her eight-year-old son in a botched murder-suicide attempt at
one of Manhattan's most luxurious hotels appeared in court today. Gigi Jordan's only child was found face up on a bed near his mother in a £1,500-a-night suite at the five-star Peninsula hotel on Fifth Avenue last month, police said. |
 Accused:
Socialite Gigi Jordan
appeared in a New York court today accused of killing her
eight-year-old son in a botched murder-suicide attempt
|
The multi-millionaire claimed to have donated most of her fortune to charities helping Haiti earthquake victims in the hours before her suicide attempt.
The boy, named as Michael Jude, was discovered in his pyjamas and 'foaming at the mouth' from an apparent drug overdose, police said. He had been dead for a day.
His mother is thought to have fed him prescription drugs and spent the night with his body before trying to kill herself.
Police who broke into her suite on the hotel's 16th floor allegedly found hundreds of pills and a bizarre two-page suicide note in which Jordan, 49, suggested her son was a rape victim and was 'in constant pain'.
The body of a boy believed to be Gigi Jordan's son Michael Jude is taken away from the Peninsula Hotel in New York
'Murder-suicide': The body of a boy believed to be Gigi Jordan's son Michael is taken away from the Peninsula Hotel last month The Peninsula hotel, 700 5th Avenue at 55th Street, Midtown
She wrote: 'I can tell you the only true happy moment in my life was when Jude was born. He was all the love I ever had in my life.
'I hope Jude is in a better place.'
Belgian-born Jordan was said to be upset after the collapse of her marriage to second husband Emil Tzekov, a pharmaceuticals executive.
+ Read more: is.gd/aItE0
FINANCES
Federal Cash Could Help SC Lawmakers Avoid Cutsis.gd/aIu30
AP - South Carolina lawmakers have approved plans that would avoid all cuts in health and medical programs.
With a 96-6 vote Monday, the House approved a measure that uses $173.6 million in federal Medicaid money to eliminate planned reductions for the Department of Disabilities and Special Needs, prescription drugs and other programs.
Agency supporters had worried that children with autism, people with spinal cord injuries and other disabilities could lose all services.
House Ways and Means Committee Chairman Dan Cooper says the extra money depends on final action from the U.S. House and Senate on a plan to help the states with budget problems.
The federal money is added to the $5 billion in state taxpayer dollars in the spending plan.
COMMENTARY
The Jury Is Still Out On Vaccines & Autism
By Mary Ellen Mannix, Philadelphia Public Health Examiner is.gd/aEXaq
Autism and specifically its most controversial potential cause has continued to garner much attention in the past month on an international level.
Earlier this week a local college professor was notified of a probe into misappropriation of funds targeted for autism research, The Drexel University adjunct professor, Paul Thorssen, was involved in two studies (2002 & 2003) citing strong evidence that there is no link between thimerasol in the MMR vaccine and the subsequent development of autism. Facing a serious probe into his financial dealings and the validity of any of his research or offerings to the autism research, Thorssen resigned from Drexel on Tuesday.
Time magazine recently reported on questions of ethics and study reliability in the work of world-renowned Autism doc, Andrew Wakefield. His work is what Thorssen, in effect, worked to debunk. Wakefield was applauded since 1998 after releasing his study that supposedly gave strong evidence of the link between thimerosal in MMR vaccines and autism. For parents struggling to understand how to help their children, Wakefield's study gave an answer to where to start.
However, The General Medical Council in Great Britain discredited Wakefield's study and deemed his research practices as unethical. Though the medical licensing board in his country considers revoking his license, he continues to head up an autism research center in Austin, Texas.
Now, a federal court is claiming to have the answer by issuing a ruling in a California legal case. The federal court judge ruled in three cases that thimerasol did not cause the autism in children. Though a court cannot offer the evidence based answers real science can, the court is in essence saying that other families with lawsuits pending will not be find a easy access to judge.
Paul Offit of Children's Hospital of Philadelphia remarked quite succinctly that the vaccine-autism theory, "already had its day in science court and failed." Perhaps, now with the obvious lack of consistent verifiable evidence, a window will open in the community to search for the truth and not convenience. Autism is a very complex challenge to not only the children who will live with it, but for the families who love these children and the clinicians who hope to help. Jean Ruttenberg, Executive Director of the Philadelphia based The Center for Autism said in a recent interview that there are still many questions to answer even if one study has been questioned. The "scientific community still has alot to offer" in investigating autism causes and issues.
Vaccine Court Denies Justice to Vaccine-Injured Children Take Action!
Mercury-Autism Link Not Found Because of Government Policy, not ScienceClick on the Take Action link is.gd/aIrp6 to send emails to your Representatives calling for Congressional hearings
In a decision released last Friday afternoon, the Autism Action Network, a founding member organization of the Coalition for Vaccine Safety (CVS), believes that the Special Masters of the Court of Federal Claims (the Vaccine Court) wrongly decided that mercury-containing vaccines do not cause autism.
"The government is completely inconsistent, we know from the Hannah Poling and the Bailey Banks cases that vaccines can cause autism," said John Gilmore, executive director of the Autism Action Network. "It is as if they are saying, 'Vaccines never cause autism, except when they do.'"
The Special Masters appear to have based their decisions on the government policy to protect the vaccine program rather than to fulfill their role to do justice by vaccine-injured children. In these three 'test case' decisions in the Omnibus Autism Proceeding, petitioners William Mead, Jordan King and Colin Dwyer developed normally through the first year of life and then regressed into autism. They presented thousands of pages of scientific documentation and testimony. Their evidence showed that thimerosal, a mercury-laden vaccine preservative, more likely than not contributed to their autism.
"The deck is stacked against families in Vaccine Court. Government attorneys defend a government program, using government-funded science, before government judges. Where's the justice in that?" asked Rebecca Estepp, a CVS steering committee member and mother of a petitioner in the Omnibus Autism Proceeding.
"This has been a huge, but legally necessary, waste of time for the injured kids and their families," said Gilmore, "At least now we will have a chance in a real court where we have the basics rights denied in the Vaccine court."
Mercury is a known neurotoxin and that damages the developing brain and the immune system. All three boys' health improved through medical interventions to reduce mercury toxicity and immune dysfunction. Nonetheless, the Special Masters concluded that petitioners failed to meet their burden of proof, even though Health and Human Services (HHS), the respondent in the proceeding, offered no alternative explanation other than genetic predisposition.
The Coalition for Vaccine Safety (CVS) is an alliance of organizations dedicated to vaccine safety representing over 75,000 families. In recent letters to the Chairmen and Ranking Members of House and Senate Committees charged with oversight of the Department of Health and Human Services (HHS), the Coalition called for hearings to investigate HHS, the CDC and other government agencies. Those federal agencies have failed to comply with the terms of the 1986 Vaccine Injury Compensation Act (VICA). Specifically they have failed to provide critical vaccine safety science, including from the taxpayer-funded Vaccine Safety Datalink, on thimerosal, autism and other neurodevelopmental disabilities.
Vaccine court decisions and revelations about Dr. Thorsen's actions only strengthen the Coalition's resolve in calling for immediate Congressional action to investigate vaccine safety - an issue that potentially affects every person in the country.
"We are confident that the truth will win out. We hope that Congress will intervene in what is clearly a miscarriage of justice to vaccine-injured children," said Jim Moody, an attorney and CVS steering committee member.
Please join the Autism Action Network and the Coalition for Vaccine Safety in calling for Congressional hearings in to the may failures of the federal vaccine program. To send an email to your Representative in the House and your to Senators please click on the Take Action is.gd/aIrp6
Note: The opinions
expressed in COMMENTARY are those of the author and do not necessarily
represent the views of the Schafer Autism Report.
LETTERS
Doctors DefendedRecent articles by ABC News and the Chicago Tribune on M.D.s who subscribe to the Defeat Autism Now! approach to treatment indicate the spread of misinformation and misunderstanding in recent months. The complaints about Drs. Usman and Rossignol resulted from a custody case-- a painful situation for any family, one that can lead to accusations that must be sorted out in a court of lawnot the media.
The Defeat Autism Now! approach to autism invites the medical community to be more responsive, inquisitive, and knowledgeable about treating these disorders.
The approach is not in itself a source of controversy, since many treatment interventions are commonly prescribed by traditional health professionals.
The great problem is rather that chronic, unaddressed illness plagues many, if not most, of the children and adults on the autism spectrum. These conditions, thoroughly documented in the scientific literature, often involve the gastrointestinal system and/or the immune system, but the medical establishment has been professionally insensible to what is a desperate situation in the expanding autism population.
The focus of the Defeat Autism Now! approach is twofold: to provide patients with allergen-free nutritional support, to uphold and to repair the immune system as needed, and, if appropriate, to reduce the body burden of environmental toxins; to provide clinicians in-depth medical and scientific information, with Continuing Medical Education credits.
We assure the public and the autism community that the Autism Research Institute will track developments closely and will provide information as necessary. We will continue our efforts to provide appropriate support to Drs. Usman and Rossignol, as well as to other physicians.
- Autism Research Institute
Let Your Voice Be Heart. Please Take the Autism Survey.
In preparation for Autism Awareness month, I am conducting a brief survey, the results of which will be included in an article I am writing.
Please take the survey.
Please share this announcement share this survey via your email distribution lists and websites. The survey will remain open until March 30, 2010 at 11:00 pm. www.surveymonkey.com/s/autism2010survey
Thank you in advance.
- Beth Clay
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