April 4, 2006

Conflict of Interest in Autism Rate Study from NAA

News Release
For immediate release

Contacts:
Wendy Fournier (Portsmouth, RI) 401.632.7523
Rita Shreffler (Nixa, MO) 417.818.9030


National Autism Association Points Out Possible Conflicts of Interest in New Study Denying Epidemic Rise in Autism Rates

New research relying on evolving diagnostic criteria to explain huge autism numbers fails to mention author’s potential conflicts

Nixa, MO - A study published today in Pediatrics, “The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” suggests that autism diagnoses haven’t actually risen over the past two decades, despite growing and credible scientific evidence to the contrary. In addition to the study’s weak methods and erroneous conclusions, questions have now arisen over possible failure to disclose conflicts of interest and recent findings that data from previous autism projects with which current study author Paul Shattuck has been associated were fabricated.

Although he was not personally implicated, Dr. Shattuck’s former research partner, a graduate student at the University of Wisconsin’s Waisman Center, was recently disciplined by the Health and Human Services Office of Research Integrity for scientific misconduct due to fabrication of data. Dr. Shattuck and others published several articles and delivered scientific presentations using data from the project in question. “We need to know the ramifications of the falsified information,” said Ann Brasher, NAA Vice President. “The autism community demands that the University of Wisconsin clearly identify all published documents that potentially contain false information.”

Additionally, Pediatrics failed to disclose a potential or actual conflict of interest. Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC).

“Given the rocky history of the CDC and the autism community, failing to mention the author’s ties to this agency is a glaring omission that requires an explanation,” commented NAA board chair Claire Bothwell. “Clearly, the CDC has a vested interest in deflecting attention from the possibility that children injured by mercury-containing vaccines ended up with autism diagnoses which fueled autism rates off the charts. It can’t come as a surprise to the Pediatrics board that any autism researcher’s relationship with the CDC is certainly noteworthy and should have been disclosed to readers. It’s unclear at this time whether the failure to disclose is on the part of the researcher or the journal, but these issues must be resolved.”

For more information, go to www.nationalautism.org

Coming up on Autism One Radio

From the Schafer Report:

Autism One Radio Schedule Apr 1-Apr 9 Three Debuts! Five Specials! Rally!
A Worldwide, Internet-Based Radio Station for the Care, Treatment, and
Recovery of All Children with Autism
http://www.autismone.org/radio

Sat, Apr 1:

Debut!
12pm-12:30 ET Andrea Unruh Sovern, DD: Ensuring Your Child’s
Future-The Ways and Means of Working towards Independence for Children with
Autism. Andrea and guests discuss the ways of obtaining appropriate services
and supports without going bankrupt, so that their children will be able to
live independently in society. Today: introducing Andrea Unruh Sovern and
her efforts with her son. Diagnosed with severe autism at 2 yrs 9 mo, Kolin
lost the medical diagnosis of autism completely at age 7. Andrea discusses
how she navigated the systems Tricare, Insurance, Medicaid and Special
Education in financing the multifaceted approach she used to ensure Kolin
could achieve independence, while maintaining financial solvency.

Sun, Apr 2:
11am–11:30 Jack & Rebecca Sytsema: Children of Destiny: Spiritual
Strength and Hope for Families Struggling with Autism. Topic: Living in the
Joy of the Lord. A look at ways to help us maintain a joyful, abundant life.

Mon, Apr 3:

Special: Combating Autism Act
10:30am-11:30 Elizabeth Emken, board member and legislative consultant
of Cure Autism Now discusses the Combating Autism Act with Teri Small. Why
is the CAA needed? How will it help children with autism?

12pm-12:30 Phillip C. DeMio, MD: First Monday of the Month at Noon:
Biomedical Treatments for the Spectrum. Topic: Gastrointestinal Treatments

Special: Early Downward Trends
1:30pm-2:30 Dr. Mark Geier and David Geier discuss their new study
entitled Early Downward Trends in Neurodevelopmental Disorders Following
Removal of Thimerosal-Containing Vaccines with Teri Small.

Tues, Apr 4:

Special: Double edition
10am–11:30 Teri Small: Autism: Help, Hope, and Healing. Guest Carline
Banks talks about the low-oxalate diet and about how she helped her son.
12pm-1 Guest Dr. Boyd Haley talks about the urinary porphyrin profile,
indicator of mercury exposure, as well as other substantiation of
Thimerosal’s involvement in the autism epidemic.

New Book Release/Upcoming Movie
1:30pm–2 Chantal Sicile-Kira: The Real World of Autism with Chantal.
Topic: “Daniel Isn't Talking” Guest: Author Marti Leimbach, mother of a boy
with autism. “Daniel Isn't Talking” is taken very much from her real life,
accurately cataloguing the struggle she had convincing anyone that her child
is able to learn, and that there is a great deal we can do to mitigate the
core deficits of autism and help a boy like him move toward a more promising
future. Marti's book “Dying Young” went to number 5 on the New York Times
bestseller list and was the basis of a film by the same name starring Julia
Roberts, who is also in the final stages of negotiations to star in the film
version of “Daniel Isn't Talking.”

Wed, Apr 5:
10am–10:30 Peta Cohen, MS, RD: Nutritional Approaches to Treating
Autism
11:30am–12 Seth D. Pearl, DC, CCN, CNS: Health and Wellness with Dr.
Seth Pearl

Debut!
12:30pm-1 Betty Jarusiewicz, PhD, LCADC and Bob Patterson, PT:
Consider Neurotherapy. Both experienced clinicians using Neurotherapy (also
known as EEG Biofeedback and Neurofeedback) will be inviting other
clinicians, including MDs, psychologists, and other health professionals to
discuss how they use this exciting modality in the treatment of people on
the spectrum. Today: what neurotherapy is about and how it has been used.

9pm–9:30 Judyth Reichenberg-Ullman, ND, LCSW, DHANP and Robert Ullman,
ND, DHANP: A Drug-Free Approach to Asperger Syndrome and Autism. Topic:
Treating the Whole Family of the ASD Child with Homeopathy

Thurs, Apr 6:

Special: Live: Mercury Generation March and Rally
9am-11 Live coverage from Washington, DC at the Mercury Generation
March, Rally and press conference. Host Teri Small.

12:30pm–1:30 Rhonda Brunett: Unlocking the Door to Autism. Topic: What
it’s like to be on the inside looking out – meet guest Marty Murphy who has
autism.
3:30pm-4 Nicki Fischer: Get Real. Topic: “Working it Through.” Guest
Stephen Shore, author and adult on the autism spectrum, talks about how he
has met various challenges in life. Discussion includes how to thoughtfully
consider whether efforts put towards overcoming some challenges may be worth
putting elsewhere. Stephen Shore was viewed as "too sick" to be treated on
an outpatient basis and recommended for institutionalization. Nonverbal
until 4, with much help from parents, teachers, and others, Stephen Shore is
now completing his doctoral degree in special education with a focus on
helping people on the spectrum develop their capacities to the fullest
extent possible.

Fri, Apr 7:
12pm-12:20 Rob Sidell and Teri Small: Autism Global Week in Review
1pm–1:30 Lisa Ackerman: Coffee Talk with Lisa Ackerman
3pm-3:30 Alyson Beytien: Family to Family
9pm–9:30 Suzanne Messina: ASIA CafĂ©: Addressing Special Issues in
Autism
10pm–11 John Hicks, MD, FAAP: Integrative Medical Approach to Autism.
Guest: Dan Marko. Topic: Understanding the Mind and Body connection.

Sat, Apr 8

Debut!
12pm-12:30 Dan Coulter: Life in the Asperger Lane. Dan and guests
discuss practical tips and techniques to help people with Asperger Syndrome
and similar ASDs succeed in the world-and help others accept and appreciate
them. Dan draws on his family’s experiences raising a son with Asperger
Syndrome and on his research as a producer of educational videos about AS
and other special needs. Today: Dan and Julie Coulter discuss strategies for
helping students with Asperger Syndrome and similar conditions who are in
mainstream classrooms succeed in grades K-12.

Sun, Apr 9
11am–11:30 Jack & Rebecca Sytsema: Children of Destiny: Spiritual
Strength and Hope for Families Struggling with Autism.

Special: Part 1 of 2
8pm–8:30 Patricia S. Lemer, M.Ed., NCC, MS Bus: After the Diagnosis,
Then What? Guest Dietrich Klinghardt, MD, PhD speaks about the 5 Levels of
Healing in Part 1 and the 7 factors in autism in Part 2 (Apr 23).
9pm–9:30 Michael Lang, MFA: Pathways of Recovery

The Age of Autism: Hot potato on the Hill

The Age of Autism: Hot potato on the Hill
By DAN OLMSTED

The newly proposed legislation to study the autism rate in never-vaccinated American kids could settle the debate over vaccines and autism once and for all. Does that mean it will never happen?

This week U.S. Rep. Carolyn Maloney, D-N.Y., stepped out front on the issue. She announced at a briefing at the National Press Club that she is drafting legislation to mandate that the federal government find the answer to that question.

Notice the word "mandate" -- as in "direct," which is the language the bill uses. As in, quit making excuses and just do it.

Bureaucrats and lobbyists and "experts" sometimes forget that the power in this country resides with the people, who express their will through their elected representatives. This may sound rather grand, but the point is that legislators are not some "special interest" who must be humored while the permanent ruling class goes on its merry way.

That's why putting a bill before the Congress -- which Maloney says she will do by the end of April after getting as much public comment as possible -- could be a bigger threat than people realize.

After all, as Maloney said this week, "Maybe someone in the medical establishment will show me why this study is a bad idea, but they haven't done it yet."

Maloney, who credits this column with the idea to look at the never-vaccinated, also critiqued the studies that supposedly have ruled out any link between vaccines -- particularly the mercury-based preservative thimerosal -- and autism.

"The one major government study to date, the Institute of Medicine's 2004 review, has been met with skepticism from a lot of people," she said. "There are serious questions about the data set and methodology.

"Meanwhile, there is new biological evidence published in top journals, and from major U.S. universities, to support the mercury-autism hypothesis. Just last week we saw the study out of UC Davis, which found that thimerosal disrupts normal biological signals within cells, causes inflammation and even cell death.

"In short," the congresswoman concluded, "I believe that there are still more questions than answers. But answers are what we desperately need."

Surely everyone's in favor of answers, aren't they? Well, no, they're not. Already, doubts are being raised about whether there are enough never-vaccinated kids to do such a study (there are); whether it's worth doing (it is); and what the results would really show (well, let's find out).

In fact, if the feds hadn't been contentedly dozing for the last decade as the autism rate inexplicably soared, we'd already have our answer.

Back in 2002 a woman named Sandy Gottstein, who does not even have an affected child, came all the way from Anchorage, Alaska, to raise this issue at a congressional hearing.

"My question is, is the National Institutes of Health ever planning on doing a study using the only proper control group, that is, never-vaccinated children?" Gottstein asked.

Dr. Steve Foote of NIH responded: "I am not aware of a proposed study to use a suitably constructed group of never-vaccinated children. ... Now CDC would be more likely perhaps to be aware of such an opportunity."

Responded Dr. Melinda Wharton of the CDC: "The difficulty with doing such a study in the United States, of course, is that a very small portion of children have never received any vaccines, and these children probably differ in other ways from vaccinated children. So performing such a study would, in fact, be quite difficult."

Another futile effort is recounted in David Kirby's book, "Evidence of Harm," which recounts parents' compelling stories that their children's regressive autism was triggered by vaccine reactions.

The book -- just out in paperback and winner of this year's prize from the prestigious Investigative Reporters and Editors -- describes how in 2004 Lyn Redwood of the advocacy group SafeMinds sent a list of proposed studies to Rep. Dave Weldon, R-Fla.

Weldon, a strong advocate of banning thimerosal, sent the list on to Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention. Redwood's proposal No. 1: "An investigation into the rates of neurodevelopmental disorders including autism in vaccinated and unvaccinated populations (e.g., Amish, Christian Scientists.)"

Last year this column set out to test that theory among the Amish, in an unvaccinated subset of homeschooled kids and in a large medical practice in Chicago with thousands of never-vaccinated children. In this admittedly unscientific and anecdotal reporting, we didn't find very many kids with autism.

That's certainly not conclusive, but we did conclude there are plenty of never-vaccinated kids in this country, and not all of them are riding around in buggies and reading by candlelight. The total number of appropriate "controls" -- reasonably typical never-vaccinated kids -- is well into the tens of thousands, at least.

Nor is the issue pro-vaccines vs. no vaccines, as some who oppose such a study are subtly suggesting. It's safety vs. complacency.

After all, the CDC switched to an inactivated polio vaccine in 2000 when it became clear that the live polio virus was causing a handful of polio cases each year. And kids today are still protected from polio -- only now with zero chance of actually contracting it from the vaccine.

Switching to a safer vaccine did not cause a collapse in public confidence in childhood immunizations -- probably quite the contrary.

Expect to hear all kinds of excuses, including that one, from the powers that be as to why such a conclusive study couldn't, shouldn't and really mustn't be done. Then ask yourself, Why?

E-mail: dolmsted@upi.com

Urville

A - freaking - mazing!

EOH Wins IRE Award

For Immediate Release – March 28, 2006
CONTACT: Elizabeth Coxe, St. Martin’s Press -- 646-307-5563

EVIDENCE OF HARM RECEIVES INVESTIGATIVE
REPORTERS AND EDITORS AWARD

Author David Kirby is cited for “careful and meticulous reporting” in his book on thimerosal and autism

PLEASE NOTE: DAVID KIRBY WILL APPEAR LIVE AT A MEDIA BRIEFING THIS THURSDAY, MARCH 30TH, AT THE NATIONAL PRESS CLUB IN WASHINGTON. FOR MORE INFO, CALL 718-230-4250

NEW YORK, March 28, 2006 – “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic” (St. Martin’s Press – Paperback edition March, 2006) has been awarded the “Investigative Reporters and Editors 2005 Award for Outstanding Investigative Reporting in a Book,” the organization announced today.

“I am honored to be recognized by such a prestigious jury of my peers,” Kirby said. “I hope this award will inspire other investigative writers to follow their leads and their hunches, and to report on all controversial topics that warrant a closer look. Thankfully, freedom of the press survives in America.”

In their comments, award judges – comprised of some of the most experienced investigative journalists in the country – noted that, “Kirby told the story of stonewalling, denial and cover-up by federal regulators, medical groups and the pharmaceutical industry.” And, they added, “He documents covert efforts by some of those same powerful forces - along with the U.S. Congress - to grant blanket immunity for drug companies that put mercury in vaccines.”

“Like so many scientific controversies involving complex science and big business, the topic is controversial. Kirby's careful and meticulous reporting is exemplary in its balance, accuracy and documentation,” the judges said.

IRE, founded in 1975, is a nonprofit professional organization dedicated to training and supporting journalists who pursue investigative stories and operates the National Institute for Computer-Assisted Reporting, a joint program of IRE and the Missouri School of Journalism. IRE Awards will be presented during the Saturday, June 17, luncheon at the 2006 IRE Annual Conference in Fort Worth. More information on IRE and the awards can be found at http://www.ire.org/contest/05winners.html.

“Evidence of Harm” is also a finalist for the The New York Public Library Helen Bernstein Book Award for Excellence in Journalism. The winner will be announced at a special luncheon at the Library on May 10, 2006.

From the Investigative Reporters and Editors Awards web site:

Evidence of Harm: Mercury in Vaccines and the Autism Epidemic — A Medical Controversy — David Kirby

Judges' comments: Autism, rare in the past, is exploding in the United States , where it is now found in one in 166 children. Attention-deficit disorder also has skyrocketed. And 1 in 6 children today has a learning disability. David Kirby investigated whether one of the causes of these childhood afflictions is thimerisol, a vaccine preservative that contains mercury, a well-documented neurotoxin. In the 1990s, the mercury-containing additive was injected into children far in excess of federal safety levels. Kirby told the story of stonewalling, denial and cover-up by federal regulators, medical groups and the pharmaceutical industry. And he documents covert efforts by some of those same powerful forces — along with the U.S. Congress — to grant blanket immunity for drug companies that put mercury in vaccines. Like so many scientific controversies involving complex science and big business, the topic is controversial. Kirby's careful and meticulous reporting is exemplary in its balance, accuracy and documentation.

Overview of Chelation Agents

From the Schafer Autism Report:

Chelation Agents
Some pros and cons in three of the most commonly used chelating agents in
autistic children:

DMSA Sodium 2,3 dimercaptopropane- 1 sulfate In the oral form,
approved by the FDA for treating lead poisoning in children as young as 1.
It can remove a wide range of metals, including lead and mercury. Long- term
use can potentially cause bonemarrow suppression or liver damage. It strips
zinc, a beneficial mineral, and supplements may be needed. It can cause
gastrointestinal problems to worsen.

DMPS 2,3 dimercaptosuccinic acid It causes fewer gastrointestinal
problems than other agents and may be more effective at eliminating mercury
than DMSA. It now comes in a cream form, which is easier to use. DMPS is not
FDA-approved although physicians can have it individually compounded for
patients. It has potentially serious side effects and blood and urine need
to be regularly monitored.

TTFD Thiamine tetrahydrofurfuryl disulfide In studies, it had a good
safety record. In a small study of 10 children on the autism spectrum, most
improved clinically. It comes in cream form. It is not approved by the FDA,
although physicians can have it individually compounded for patients. It has
a strong odor described as "skunklike" even in cream form, and has a bad
taste in powdered form making it difficult to give to children who cannot
swallow a capsule.
Source: Autism Research Institute's Defeat Autism Now Project

WSJ Looks at Chelation

WSJ Looks at Chelation

By Amy Dockser Marcus for The Wall Street Journal

One of the most frustrating struggles in children's medicine has been the long-running, and often controversial, effort to treat autism.

Now, some parents and physicians are touting an approach that could be the most controversial yet: using drugs that strip the body of metals.

The treatment, called chelation therapy, has been used for decades to detoxify people contaminated with metals through industrial accidents or environmental exposure. The drugs have potentially serious side effects -- including bone-marrow and liver problems -- because they also strip necessary minerals such as iron and zinc from the body.

But advocates of the technique say the drugs can significantly reduce autism's devastating symptoms such as lack of emotion and repetitive behaviors. Some go so far as to say that autistic children treated with chelation can return to normal health.

Chelation Agents

The practice grew out of the belief among many autism experts that heavy metals -- especially mercury-based preservatives in childhood vaccines -- are to blame for autism. An Institute of Medicine report in May 2004 found no link between autism and vaccines. But the theory got a boost last year after a toxicologist who treated his own son with a chelating medication testified before a congressional subcommittee chaired by Congressman Dan Burton of Indiana. Rashid A. Buttar told the committee that 19 of the 31 patients in his North Carolina clinic using the medication, called TD-DMPS, for more than a year had a complete loss of their autistic symptoms. The results haven't been published, though Dr. Buttar says he is working toward that.

The practice of chelation as a treatment for autism has been greeted with anger by many in the mainstream medical establishment, who decry the potential side effects and note that there are no published clinical trials demonstrating that it works. Some contend that children who seem to improve after therapy were likely misdiagnosed as autistic to begin with, or simply have a milder form of autism.

Many autistic children who have been treated with chelation were undergoing numerous other treatments as well, including in Dr. Buttar's research.

That makes it "difficult to tease out the effect of chelation," says Marie McCormick, professor of maternal and children's health at the Harvard School of Public Health. Only clinical trials are likely to resolve the debate, adds Dr. McCormick, chairwoman of the committee that wrote last year's IOM report on vaccines.

The traditional approach to treating autism has focused on intensive behavioral therapy, special education and speech training. Autism, which affects as many as one of every 166 U.S. children, according to the Centers for Disease Control and Prevention, is a developmental disorder that affects a child's communication, creative play and social interaction.

There is no way to know how many autistic children are undergoing chelation. The CDC reported last year that 60,000 Americans use some form of chelation therapy. But it isn't known how many are being treated for lead poisoning or other diagnoses. Representatives for the CDC and the federal Food and Drug Administration said they had no comment on the use of chelation therapy for autism.

Word-of-Mouth

Thus parents embarking on chelation are relying primarily on anecdotal reports through the Internet and other word-of-mouth avenues. The story of Lenny Hoover, 6 years old, from Royal Palm Beach, Fla., is one that advocates of chelation therapy often cite.

Lenny Hoover's parents say chelation helped reverse his autism. He now attends regular kindergarten.

Charles Hoover, Lenny's father, says his son was diagnosed with mild to moderate autism at the age of 2. The Hoovers first put Lenny on a wheat- and dairy-free diet, in the hope this would reduce his gastrointestinal problems, which are a common issue for autistic patients. They started him on intensive behavioral therapy. When he was 28 months, they also began chelating him after tests showed Lenny had elevated tin, nickel and arsenic in his urine. They mixed a medicine called DMSA into his juice, which he had to drink every eight hours for three days, with 11 days off. He did 38 rounds of chelation following this schedule.

"We had a heck of a time getting him to drink it," said Mr.Hoover. "It smells like sulfur and is horrendous."

But Lenny started making such rapid gains that they eventually stopped behavioral therapy. By the time Lenny was 5, the local school determined that he had no developmental delays. He started a regular kindergarten last fall. Says Mr. Hoover, "We lost our son, then we got him back."

A number of Web sites and autism support groups offer information to parents on chelation. A Yahoo chat group about chelation and other biomedical treatments for autism, Chelatingkids2, has more than 1,800 subscribers, according to co-founder Ann Brasher. The Autism Research Institute, an advocacy group in San Diego that supports the idea that vaccines are the primary source of mercury poisoning in autistic kids, says that in its most recent parent survey, 73% of the 187 parents who said they use chelation therapy reported that it was helpful. Today, the institute, which says it is funded mainly by individual contributions, is set to release a report recommending chelation as "one of the most beneficial treatments for autism and related disorders."

Question of Diagnosis

Some critics argue that patients such as Lenny Hoover may have been misdiagnosed -- that such children were actually at the high- functioning end of the spectrum of autistic disorders or were never even autistic. Mr. Hoover says that Lenny demonstrated typical autistic behavior. Lenny had lost his speech ability, slept only a few hours at night, and in home videos he is seen spinning around in a circle, over and over again.

Mr. Hoover acknowledges that it is difficult to say conclusively which of the therapies used on Lenny was helpful. He says that the diet, behavioral therapy and chelation all helped his son, but that he believes chelation was a key. At this point, Lenny eats a regular diet and hasn't done any chelation since July 2003, when his parents decided he wasn't making further gains from the therapy.

Off-Label Use

There are many medications used for chelation. Some, such as DMSA -- a chemical compound made by a variety of manufacturers including Epochem Co. in Shanghai -- are FDA-approved for other treatments including lead poisoning. Doctors who prescribe these to treat autism are using them off-label, which is allowed for already-approved medications. Others aren't FDA-approved. But pharmacists can compound them for individual use at a physician's request. The drugs can be given in several ways, as creams, pills or via shots or intravenous infusions. Regimens vary in frequency,
dosage and length of treatment.

Before starting chelation, patients undergo testing to measure their exposure to heavy metals. Doctors disagree on the best way of testing metal exposure. Options include hair, urine and blood tests. Critics say these tests can have high false-positive rates. The Autism Research Institute supports the use of a so-called provocation test, which involves giving a chelating agent followed by urine or stool collection to see whether heavy metals were excreted.

Chelation therapy isn't cheap, with medications running $100 to $200 a month. Testing also can be expensive, costing $1,000 to $2,000 to get started, and $1,200 to $2,400 a year in monitoring. Insurers don't cover chelation therapy for autism or other off-label uses.

New Studies

The metal-cleansing treatment also is gaining ground as a treatment for a range of conditions besides autism, including Alzheimer's and heart disease. A preliminary study published in Archives of Neurology in December 2003 found that removing metals accumulating in the brain of Alzheimer's disease patients using the chelating drug, clioquinol, appeared to slow the progress of the disease. Two institutes of the National Institutes of Health last year opened a clinical trial that so far has enrolled more than 500 patients to test whether chelation therapy benefits patients with heart disease.

Later this year, investigators at Arizona State University in Tempe, Ariz., will launch a clinical trial involving 80 autistic children ages 3 to 9. Half of the children will receive DMSA, the treatment approved by the FDA for lead poisoning. The other half will receive a placebo. The trial aims to demonstrate whether chelation therapy can improve the symptoms of autism.

Dan Olmsted on NPR

http://www.wamu.org/programs/dr/06/04/03.php#10805

March 29, 2006

Back

Hello blog friends.

I am back, and here to offer an apology for my sudden and extended absence. I am finding out how hard it is to both be the parent of an autistic child and write about being the parent of an autistic child.

God willing, I will be ramping the blog back up over the next week or so. I literally have more than 6000 emails/articles to go through so it will take a while to get back up to speed. For all I know, autism could have been cured in the last three months and I will be the last one to hear about it.

I have decided to just post everything I would have posted in the last few months had I been writing, so if you run into old information here over the next week or two, that is why. I will make sure to date the articles so you know if you are re reading something you may have read already.

I have gotten lots of nice email, but have responded to none, so if you have written to me, thank you, and please forgive the non-response. I will be answering all the email that has come in. Thanks for your patience.

FAIR: Politics of Autism

From FAIR:

New Politics of Autism Video:

November, 2005: F.A.I.R. Autism Media
Interviews Attorney James Moody

FAIR Autism Media has just posted a new interview with Jim Moody, a practicing attorney and founder of Citizens for a Competitive Economy. He sits on the executive boards of both SAFEMINDS and the National Autism Association. He is very active in cause related advocacy.

In this interview, filmed Nov. 2005, Mr. Moody discusses recent political issues of concern to parents with autistic children. Some topics covered include the CDC, the FDA, the 2004 IOM (Institute of Medicine) report and some industry-friendly legislation that curtails the rights of vaccine-injured children.

March 28, 2006

Asperger's Ruled A Disability

Federal judge rules that Asperger's syndrome is a disability
January 31, 2006

PORTLAND, Maine --A York County girl who suffers from Asperger's syndrome is entitled to special education services even though she completes her homework, behaves well in class and scores well on tests, a federal judge ruled.

U.S District Judge D. Brock Hornby ordered School Administrative District 55 to assemble a team of teachers and specialists to design an appropriate learning program for the girl, identified in court documents only as "L.I."

In his ruling, Hornby said the girl's parents demonstrated that the disability adversely affects her educational performance "and is thus eligible for special education under (federal law) due to her Asperger syndrome and her depressive disorder."

Richard O'Meara, the family's lawyer, said the decision recognizes that social development is an important part of education, along with academic studies.

"Education is so much more than academic performance," O'Meara said. "Hopefully, this will put that debate to rest once and for all."

While Hornby overturned the district's decision to deny services, the judge also denied the family's reimbursement request for the two years of private school tuition it has paid since taking her out of public school in 2003.

Nonetheless, advocates for the disabled hailed the ruling as a victory.

The decision clarifies the question of who is eligible for services, and it will have an impact both in the state and beyond, said Peter Rice of the Disability Rights Center of Maine.

Eric Herlan, lawyer for SAD 55, declined to comment until he has reviewed the 48-page ruling, which was issued Monday afternoon.

Asperger's syndrome is a milder variant of autism. The name comes from Dr. Hans Asperger, an Austrian who described the syndrome in 1944.

Hornby's ruling described Asperger's as a "clinically recognized pervasive developmental disability" with symptoms that include "limited interests or an unusual preoccupation with a particular subject to the exclusion of other activities."

School is challenging for Asperger's students because they often have poor social skills and difficulty communicating, Hornby wrote.

L.I., who attended public schools in Hiram and Cornish through 5th grade, performed well academically but in the fourth grade her teachers noticed that she looked sad, anxious and had a difficult time making friends.

When she was in sixth grade, she stopped studying and attempted to commit suicide by overdosing on several medications. A psychiatrist evaluated her and diagnosed her with Asperger's syndrome and "depressed mood."

A team assembled by the school, however, denied special education services to her "since there was no adverse impact on her academic progress." Her family appealed but the decision was upheld by an independent hearing officer.

O'Meara said the decision could have a broad impact. "It should qualify kids for special education even when academically it seems they are able to succeed in school," he said.

Vaccine Schedule Changes

Recommended 2006 Immunization Schedule, American Academy Of PediatricsCategory: Pediatrics News
Article Date: 31 Jan 2006 - 0:00am (UK)

The American Academy of Pediatrics (AAP) has issued the recommended 2006 childhood immunization schedule for the United States. The statement represents joint recommendations from the AAP, the Advisory Committee on Immunization Practices (ACIP) of the Centers for Disease Control and Prevention (CDC), and the American Academy of Family Physicians (AAFP).

The 2006 schedule reflects several changes including the following:

-- Hepatitis A vaccine is now recommended for universal administration to all infants 12 to 23 months of age, with a second dose six months later.

-- A single dose of meningococcal conjugate vaccine, a vaccine to prevent sepsis and meningitis, is recommended for all 11-to 12-year-olds, for adolescents at high school entry or 15 years of age, and for college freshmen who will be living in a dormitory.

-- A single dose of an adolescent preparation of tetanus and diphtheria toxoids and acellular petussis (Tdap) vaccine is recommended for 11- to 12-year-olds, provided they have not received a tetanus and diphtheria (Td) booster dose, and for adolescents 13 to 18 years of age who missed the 11- to 12-year-old Td or Tdap booster dose.

A licensure application has been submitted to the Food and Drug Administration for a live, oral rotavirus vaccine. The AAP is considering recommendations for use of this vaccine.

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.

American Academy of Pediatrics

National Press Club Media Mercury/Autism Briefing

MEDIA ADVISORY

--VACCINES, MERCURY AND AUTISM--

MAJOR BRIEFING ON SIGNIFICANT NEW DEVELOPMENTS IN THE ONGOING CONTROVERSTY-


WHAT: A panel briefing on the growing evidence of a link between mercury, vaccines and autism, and important new developments on Capitol Hill, in major universities and within the mainstream media.

WHO: Dan Olmsted, journalist for UPI who writes the regular column, “The Age of Autism.” Mr. Olmsted will discuss his recent reporting on unvaccinated populations – including Amish children in Pennsylvania and patients at a holistic medical practice outside Chicago – as well as other investigations into early cases of autism, and reports of improvements after medical treatments.

David Kirby, author of the book “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic.” Mr. Kirby will discuss newly published science from major US universities that support the mercury-autism link, media reports of recent declines in new autism numbers, and newly leaked IOM transcripts that would indicate undue pressure by the CDC over IOM vaccine committee members to reject the thimerosal-autism hypothesis.

Rep. Carolyn Maloney (D-NY), who will unveil a bill to provide for a new study of vaccinated and unvaccinated populations of American children. Data from this relatively simple study could settle once and for all the question of a link between vaccines and autism, ADD, ADHD and other disorders. Rep. Maloney will also discuss the Federal bill to ban thimerosal in vaccines, which she co-sponsors with Rep. Dave Weldon (R-FL), and a possible Congressional move to empanel a new committee of the Institute of Medicine that would consider new evidence to support the link.

Katie Wright, daughter of NBC/Universal President Bob Wright and Suzanne Wright, founders of the new autism research charity “Autism Speaks.” Ms. Wright will talk about her son’s autism diagnosis, her belief that thimerosal contributed to his illness, and recent progress he has made using state-of-the-art biomedical interventions. Ms. Wright will also discuss her dismay at the American Academy of Pediatrics, which does not publicly support the Combating Autism Act of 2005, reportedly because the bill earmarks money for research into vaccine preservatives.


WHEN: Thursday, March 30th. Breakfast at 8:30am, briefing from 9:00-10:00am.


WHERE: National Press Club, 529 14th St. NW, 13th Floor, Washington, DC.

CONTACTS: Olmsted: 202-302-3753; dolmsted@upi.com

Kirby: 718-230-4250; dkirby@nyc.rr.com

Maloney: Afshin Mohamadi, 202-225-7944