TACA E-News

2a TACA’s FIRST ANNUAL ADOPT A FAMILY CAMPAIGN!

This year a dream came to true. During the holidays, TACA was able to help families in need.

Talk About Curing Autism (TACA) is pleased to announce its first annual Adopt-A-Family Holiday Campaign! The holiday season is a happy time filled with warmth, love, generosity and hope – and it is through the special holiday generosity of the Northrop Grumman Corporation that we were able to launch this program.

TACA adopted families to help provide the things that will make this holiday season special. TACA and friends provided holiday gifts for your children, assistance with special needs such as diapers, groceries, vitamin supplements, etc., and the delivery of a special holiday dinner. Holiday giving was valued at approximately $200 on average which was based on family need and family size.

This season we are thankful to the TACA families, friends and sponsors who donated their time, shopping expertise and in many cases – their money. We were able to adopt 22 families and help spread holiday cheer to 77 TACA friends!

Special thanks to these vendors and TACA friends who participated in supporting these families in need:

Northrop Grumman & Debbie Gonzales

Kirkman Laboratories - www.kirkmanlaboratories.com

ENER-G Foods: www.ener-g.com

Fran & Lenn Rosenfield and Temple Ahavat Shalom

Team Vico – www.teamvico.com

Autism Spectrum Consultants – www.autismconsultants.com

Sensaria Natural Bodycare

The amazing additional donations from TACA families and friends

AMAZING TACA volunteers and families who CARED to give their time and efforts! THANK YOU!

Due to the success of this amazing program and the need of families, TACA is investigating in providing Families in Crisis funding YEAR ROUND. Please stay tuned for an announcement of this exciting program if you wish to help or need the support before April 2006.

THANK YOU AGAIN! WE SO APPRECIATE YOUR SUPPORT!!

3 General News

3. Article A: A Tremendous Loss to the Autism Community

Crash on 82 kills woman - A two-car collision at Brush Creek Road and Highway 82 Wednesday killed one woman, injured two other people and backed up traffic for hours.
The Aspen Times/Mark Fox

John Colson
December 29, 2005

An Illinois woman died after two cars collided Wednesday at Highway 82 and Brush Creek Road. Two others were injured, and the wreck snarled traffic in the upper valley for hours, according to the Colorado State Patrol.

Elizabeth Birt, 49, of Wilmette, Ill., who reportedly was visiting Aspen with friends, died of injuries she suffered in the crash, according to Pitkin County's chief deputy coroner, Scott Thompson.

Birt was a passenger in a westbound 2006 Ford Taurus, which Steven D. Felt, 52, also of Wilmette, was driving, according to the Colorado State Patrol. Felt's son, Michael, 13, was also in the car.

About 9:30 a.m. Steven Felt turned left off Highway 82 to head south on Brush Creek Road.

A pickup truck carrying driver Blake Williams, 31, and passenger Mary Williams, 31, both of Snowmass, reportedly was heading upvalley on Highway 82 and slammed into the Taurus between the front and back doors on the passenger side.

The impact spun the sedan into the northbound lanes of Brush Creek Road. The truck kept going on the highway for another 44 feet, coming to a stop blocking both upvalley lanes of the highway, according to the State Patrol.

Birt had stopped breathing by the time emergency personnel had pulled her from the car, but she was resuscitated by rescuers at the scene, Thompson said. She died in the emergency room at Aspen Valley Hospital at 1:26 p.m.

The Williamses both were wearing seat belts and received only minor injuries. A State Patrol report did not indicate whether they were taken to Aspen Valley Hospital.

Steven Felt was wearing a seat belt, but the State Patrol said it did not know whether Birt and the younger Felt were wearing seat belts. Steven Felt was ticketed for careless driving causing serious bodily injury, careless driving causing death and no proof of insurance.

Rescuers had to cut the roof off the sedan to get the occupants out, and Ayers said all three were taken to Aspen Valley Hospital for treatment of serious injuries. Michael Felt later was airlifted to The Children's Hospital in Denver, according to the State Patrol, although officials at that hospital said Wednesday evening they had no patient by that name.

The wreck drew most of Pitkin County's on-duty deputy sheriffs into action for much of the morning, as well as officers from the Aspen and Snowmass Village police departments and the Colorado State Patrol.

Because the truck was blocking the upvalley lanes of Highway 82, deputies diverted eastbound highway traffic down Smith Hill Way and over McLain Flats Road into town for five and a half hours, according to the State Patrol.

The sedan was blocking both northbound lanes of Brush Creek Road just before the intersection. Snowmass Village police Sgt. Brian Olson said his department diverted traffic onto Highline and Owl Creek roads from 10 a.m. to about 2:30 p.m., when Highway 82 was reopened to traffic.

Who was Liz Birt?

Curtsey of Ginger Taylor

Yesterday, Liz Bert, one of the original Mercury Moms, was killed in a car accident when the car her family was traveling in was struck by a pickup truck.

Liz was a Chicago lawyer who became an autism activist after her son was diagnosed with regressive autism. She was one of the founding members of Safe Minds and founded Medical Interventions for Autism, a medical research charity and was on the board of A-CHAMP. She testified before Congress on the subject of mercury in vaccines and was one of the subjects of David Kirby’s book, Evidence of Harm. Indeed much of the information that Kirby shared in his book was uncovered by Liz.

She also was a proponent of estate planning for parents of ASD children and worked with parents so that their vulnerable children would be well cared for in the event of their untimely death.

She is someone toward whom I feel a great debt of gratitude for all that she has done. Parents like me who are new to the battle are only able to have a voice because we are standing on the shoulders of Giants. Liz Bert is one of those Giants.

Thanks to National Autism Association:

It is with great sorrow that we announce the passing of our dear friend and colleague Liz Birt. Liz was a co-founder of the "Coalition for SafeMinds" and was an active board member of the organization. She also founded Medical Interventions for Autism, was a founding board member of the National Autism Association, co-founder and board member of A-Champ and helped with the development of Extreme Sports Camp in Aspen, Colorado. Liz was a principal author of Mercury in Medicine, the staff report released by the House Government Reform Committee in 2003 that for the first time brought together the background and evolving science concerning the toxicity of mercury used as a preservative especially in childhood vaccines.

Liz's son Matthew was diagnosed with pervasive developmental disorder in 1996. She dedicated her life to finding out what caused his disorder and what could be done to help him and the thousands of children who suffer with autism spectrum disorders today. Her brilliant mind, strong spirit and passion for truth will be missed by everyone in the autism community. May her commitment and dedication to serving children with autism live on in those whose lives she touched.

Liz, a corporate and tax attorney by training lived in Wilmette, Illinois with her three children Sarah, Matthew and Andrew Lopez. She was born and raised in Kansas City, Missouri, where she is survived by her two brothers and her father. All of Liz's friends and colleagues at SafeMinds send our deepest condolences to her family, friends and loved ones. Liz was a force of nature and a shining example of love for her family and friends. We will all miss her.

Please share your thoughts and memories of Liz here.
http://www.nationalautismassociation.org/liz/liz.htm

3. Article B:

Alternative Approach to Autism

Parents of some autistic kids are at odds with many experts over the
efficacy of nontraditional treatments.

By JENIFER B. MCKIM
THE ORANGE COUNTY REGISTER

BELIEVERS: Joseph Farrell's parents say the boy never would have improved from autism the way he has without costly, extensive treatment like an oxygen chamber, a strict diet and a $500-a-month regimen of medicines.

Joseph is lying in a hyperbaric oxygen chamber, breathing from a mask and playing Nintendo.

The therapy is meant to clear the fourth-grader's head and repair nerve damage linked to a 7-year-old autism diagnosis.

It's routine for him - breathing pure oxygen on the second-floor landing of his parents' home. But it puts the lean, good-natured boy directly in the vortex of a contentious debate about what causes autism and how it can be treated.

Joseph Farrell, 10, joins what some parents and doctors say is a growing group of children who have "recovered" from autism, partly because of alternative treatments largely dismissed by mainstream doctors.

Parents in Orange County and nationwide are turning to treatments such as oxygen therapy, chelation and a wheat- and dairy-free diet to treat autism, many under the supervision of doctors trained by the Autism Research Institute in San Diego.

Although there is no national data, a 2004 report in the Journal of Developmental and Behavioral Pediatrics showed one in three recently diagnosed Philadelphia children use such treatments.

Many doctors and researchers are concerned that parents are spending considerable money and emotion on treatments that don't help or could cause harm. Last summer, a Pennsylvania boy died while being injected with a chelation drug meant to eliminate toxic metals from his body.

"There is no scientific valid evidence that any of these treatments alter the natural course of the disease,'' said Edward Ritvo, UCLA professor emeritus and author of "Understanding the Nature of Autism and Asperger's Disorder: Forty Years Along the Research Trail."

"I'm very glad (Joseph) got better, but he got better because it was the genetic program and God's will, not because of what was done to him," he said.

Answers are important for the parents of the nearly one in 166 children reported to have an autism spectrum disorder, including autism, Asperger syndrome and pervasive development disorders.

In California, the number of autism diagnoses has risen to 28,000 from 6,000 over the past 10 years, according to the state Department of Developmental Services.

An autism diagnosis can be devastating. Symptoms, ranging from mild to severe, include communication problems and obsessive or ritualistic behaviors.

Inflaming the debate is the belief among some parents that mercury in vaccines poisoned their children, a thesis rejected by the Centers for Disease Control and Prevention and the Institute of Medicine. Doctors worry that some parents shun vaccines altogether, putting children at risk for polio, measles and whooping cough.

Joseph's parents, Joe and Selina Farrell, say their oldest son never would have improved the way he has without costly, extensive treatment like the $21,000 hyperbaric chamber. Joseph also follows a strict diet and a $500-a-month regimen of pills, including fish oils, vitamins, minerals and a detoxifier.

He recently was weaned off the oral chelators. Chelation usually involves taking a chemical – by pill, injection or lotion – that binds with heavy metals in the body and comes out in the urine.

"We can't wait for science to catch up," said Selina Farrell, member of a Newport Beach-based parent group, Talk About Curing Autism. "I want people to know that there is a child who did these things and really did recover."

Researchers are launching studies, some federally funded, to scrutinize what parents say.

"When you consider anecdotal evidence, they sure present a strong story for some of the treatments," said Robert Hendren, executive director of the UC Davis M.I.N.D. Institute. "I think it is worth considering rather than dismissing too quickly."

Joseph was born healthy at 5 pounds, 14 ounces. He developed normally, his parents said, until he was about 10 months old, when he began to flap his hands, a common behavior with autistic children.

He started talking and interacted well, but then his language regressed. He had tantrums. He'd lie on the floor, pace or jump.

His parents, both lawyers, felt Joseph was being stolen from his body. But several pediatricians said not to worry.

When he was 3, Joseph went to preschool. Other children were talking in sentences. Joseph was still pointing, saying only words like "desk" and "computer." He sat and spun wheels on trains. "I felt my blood go cold," Selina Farrell said.

After a neighbor mentioned autism, Farrell discovered the Autism Research Institute on the Internet. It was founded by Bernard Rimland, who wrote a 1964 book challenging a long-held belief that autism was an emotional disorder caused by poor mothering.

Rimland recommended a diagnostic survey for Joseph. They knew immediately. "It was a total relief to finally have a name for the disorder," Farrell said. "I knew the enemy."

The Farrells started Joseph on Applied Behavior Analysis, a now widely accepted therapy including intensive behavioral and educational training. They joined Talk About Curing Autism, a 1,400-member parent group that supports biomedical treatments.

The Farrells also went to a conference held by Defeat Autism Now, a project of the Autism Research Institute. The institute holds meetings around the country, often leading children onstage who they say have lost their autism diagnosis.

At the conference, the Farrells heard the still-debated theory that autistic symptoms can be caused by intestinal and immune-system problems that prompt toxins to affect the brain. They believe Joseph was poisoned by toxins injected in the 16 vaccines and the antibiotics that he was given before the age of 2.

Proof, they say, lies in the boom in autism diagnoses in the past two decades, which came in tandem with an increase in vaccinations recommended for children.

They started Joseph on a wheat- and dairy-free diet. After some months, they said, Joseph began to think more clearly and had less self-stimulating behavior seen in autistic children.

They also determined that Joseph had yeast infections that were affecting his behavior and decided to try an anti-fungal medicine. They saw great improvement, but unsure if it was because of the medicine, they stopped using it. He began to pace and flap his hands again.

When Joseph was 5, they consulted a doctor now based in Texas who supports biomedical treatments.

"The only reason they know about me is because parents say my kids are doing better if you do this and this and this," said Dr. Jerry Kartzinel, who comes to California once or twice a year to treat about 200 children. Traditional doctors "refuse to look at the evidence," he said.

Kartzinel prescribed an oral chelating agent for Joseph. The Farrells could see a difference in his thinking and evidence of metals in his urine samples. Most recently, they began to put him in a hyperbaric oxygen chamber, one of the newer treatments for autistic children.

Selina Farrell believes the behavioral therapy was instrumental in Joseph's recovery but the biomedical treatments pushed him into the mainstream. Although Joseph needed a full-time aide in preschool and half of kindergarten, he now goes it alone. He excels in accelerated classes, but still struggles socially.

The center that oversaw his treatment said in 2002 that he no longer qualified for services.

"The diagnosis of autism requires very specific symptoms, and clearly Joseph doesn't have them any more," said Doreen Granpeesheh, executive director of the Tarzana-based Center for Autism and Related Disorders.

Some staff at Joseph's school are skeptical.

"He's made a lot of progress, but I'm hesitant to say he doesn't have autism," said Lynelle Laubach, the school's speech and language pathologist. "I don't think it is something that goes away."

Advocates of biomedical treatments say they don't claim all children can be cured of autism - simply that treatments can help.

The Autism Research Institute says treatments have helped thousands of children recover.

"We are not saying the kids are perfect. We say they are perfectly capable of getting along," Rimland said. "We are saying they are no longer considered autistic."

Joseph's pediatrician, Dr. Bob Sears of Dana Point, was skeptical when the Farrells asked him to prescribe an anti-fungal medicine to treat autistic symptoms. But he saw a difference in Joseph and decided to learn more. Now he has 200 patients he has treated biomedically.

"The number of times we see amazing results is often enough to keep me really excited about it," Sears said.

Skeptics say autistic children can naturally improve over time. They talk about the placebo effect. They point to Secretin, a gastrointestinal hormone therapy that spread in popularity after news that it helped several autistic children. Scientific studies did not support the theory.

The American Academy of Pediatrics in 2001 issued a statement dismissing most alternative treatments, including chelation and special diets. However, it directs doctors to stay supportive and involved with parents interested in such endeavors.

"I rarely say 'don't do this,'" said Susan Hyman, an associate professor of pediatrics at the University of Rochester in New York and a member of the academy's advisory task force on autism. "Parents are in a desperate situation . They need to be aware they are taking a risk."

Joseph is more interested in Yu-Gi-Oh cards and hanging out with his best friend, Alex, than in worrying about risks. He understands that he is taking measures designed to help him think.

"It's because I used to have autism. I'm not exactly cured, it's 99 percent," he said.

Joseph doesn't mind the diet. He hopes someday to be completely cured. "I really want to eat maybe like a full made cheeseburger and a pizza."

Editors note: Special thanks to Jennifer McKim for writing this story and a great big thanks to the Farrell family for speaking out – both actions take courage and are to be commended.

The comments from the quoted professor made me more than sad. Had this professor worked with Joseph? Did he know him before, during and after intervention to make this comment? I don’t know who is more “desperate” -- the parents looking for answers from experts or these “experts” holding on to the myths of the past and writing off a generation of kids.

All I can think about in this situation is the quote off the TACA web site:
“When doctors repeatedly tell you there is nothing you can do, it is going to take a lot of families to prove they’re wrong.” Comments like these drive parents to find their own answers. I guess it is going to take some more children losing their autism diagnosis – so lets get busy!

3. Article C:

Testing rules contradict each other
Disabled students penalized for using approved alterations [link]

- Nanette Asimov, Chronicle Staff Writer
Talk about a Catch-22.

The U.S. Education Department has just issued a new rule saying disabled students who must use a calculator or other device when taking a test will be marked absent and their exam won't count under the nation's sweeping school reform law dubbed No Child Left Behind.

At the same time, schools are required by the federal Individuals with Disabilities Education Act to let students use such tools if they have a disability that impairs their ability to read or do math.

"This is crazy," said Bill Padia, testing director at the California Department of Education, which is required to enforce the new federal rules. "We just shook our heads incredulously."

Federal officials counter that there is logic behind the new rule barring modifications during tests.

Darla Marburger, deputy assistant secretary with the U.S. Department of Education, said a test that's supposed to measure math skills can't measure those skills if a student uses a calculator. Similarly, a test can't measure reading skills if a student is listening to the test being read from an audio player.

"It's perfectly acceptable to change the environment of the test, or the seating, to accommodate certain needs," Marburger said. "But it's not OK to use modifications that fundamentally change how the student is being assessed."

She said the decision to prohibit modifications was made earlier this year during a wide-ranging discussion within the Department of Education about testing students with disabilities.

In California, nearly 700,000 students have some kind of disability and are given an "individualized education program." Many of those programs specify that a modification such as a calculator or audiobook is needed for that student's schoolwork and tests.

The new rules barring those modifications are the latest federal tweak to the controversial No Child Left Behind Education Act, which establishes strict regulations for state exams and sets consequences for failing to satisfy the rules. Ultimately, every student is expected to score at grade level by 2014.

Yet disabled students marked absent for using modifications cannot score at grade level.

So what's a teacher to do?

"This has put the teachers squarely into a dilemma," said Sharon Bleviss, special education department chairwoman at Capuchino High School in San Bruno. "Either they can support the students ... or deny the students their rights."

If they let kids use the modifications allowed under the Individuals with Disabilities Education Act, teachers say they may place their school at risk under No Child Left Behind.

That's because the federal education law can punish certain schools that fail to satisfy any one of several requirements -- including a rule that 95 percent of students with disabilities within each school take the state's tests.

Schools that fall short of that or other requirements are labeled underperforming and risk being shut if they underperform year after year.

In California, the state Education Department recently sent out a notice attempting to clarify the modification issue for high schools, which will soon be administering the Exit Exam, one of two tests used by the state for No Child Left Behind. (The other is the California Standards Test.)

The state's notice explained that students who take the test with modifications "will not count toward the 95 percent participation rate requirement" of No Child Left Behind.

But in bold-faced type, the same notice also said schools are required to "provide students with any accommodations or modifications specified in their individualized education program" during Exit Exam testing.

Advocates for the disabled say they have already seen evidence that some school officials are trying to discourage students from using the modifications they are entitled to -- or even prevent them from having the modifications written into their individualized education plan to begin with.

"We've talked with students whose school districts have (advised them) not to include modifications in their programs because the test scores won't count," said attorney Stephen Tollafield of Disability Rights Advocates in Oakland. "But students have a legal right to use whatever modifications they need."

Bleviss, of Capuchino High, said that her San Mateo Union High School District has told teachers "that when possible, we should administer the test without the modifications for 10th-graders."

Students can try to pass the Exit Exam several times, however, and the district has said that students could resume the use of modifications if they need to take the test more than once, Bleviss said.

But, she added, this system may be appropriate for some students and not for others, who need the tools every time they take a test.

The U.S. Department of Education expects to reach a compromise on the issue, Marburger said. It would allow states to use simpler tests "that accurately measure students' achievement and won't require a modification," she said. "We hope to be able to get a proposal out this winter. Maybe sooner."

E-mail Nanette Asimov at nasimov@sfchronicle.com

3. Article D:

Autism Speaks & NAAR Merger Comments

Dear Friends:

The merger of the National Alliance for Autism Research (NAAR) into Autism Speaks, announced last Wednesday, is a positive development for autism. The combined entity, branded as Autism Speaks, will continue NAAR’s scientific research program and will be led by Bob and Suzanne Wright, grandparents who bring valuable resources to our community. Cure Autism Now has a 10-year history of collaborating with autism and scientific organizations and we look forward to working with Autism Speaks as a significant partner.

Cure Autism Now will continue to aggressively and successfully pursue our mission of accelerating scientific research to prevent, treat and cure autism. We remain true to our core values of urgency, innovation and scientific excellence. We are especially focused on today’s generation of affected children as we believe a cure will come during their lifetime. Our philosophy has always been inclusive and we promote collaboration at every opportunity. Cure Autism Now recruits brilliant minds from many fields and creates open resources that all scientists and clinicians can use. We continue to work with the federal government--via Congress, the National Institutes of Health, and the Centers for Disease Control and Prevention--to address the magnitude of the autism epidemic. We have a deep knowledge of autism and a thorough expertise in scientific research, an openness to pursue all avenues, from genetics to the environment, in order to understand the underlying mechanisms, and a willingness to investigate current therapies as well as those being developed from basic research. We were founded on an understanding of families and their experiences and we are committed to delivering on our promise to find a cure for autism.

We love our children. They struggle every day. Autism is a crisis and we need to move fast, across innumerable fronts. It will take many organizations and individuals, with a diversity of talents and perspectives, to address this urgent need. Cure Autism Now will continue to play a vital role in this effort and we welcome the important contribution Autism Speaks will undoubtedly make. Working together, the autism community in its broadest sense--families, friends, clinicians, scientists, government--will ultimately resolve this human tragedy.

Peter Bell Sallie Bernard Jonathan Shestack
CEO Board Chair Co-founder

3. Article E:

New Study to Evaluate Effect of an Investigational Drug on Gastrointestinal Dysfunction in Children with Autism

SACRAMENTO -- The UC Davis MIND Institute is one of twelve trial sites participating in a research study to evaluate an investigational medication for the treatment of persistent gastrointestinal (GI) dysfunction in children with Autism.

Frequently children with autism experience persistent GI problems, ranging from mild to moderate degrees of inflammation in both the upper and lower intestinal tract. These problems have an impact on the autism community, which currently has limited information on the cause and appropriate treatments.

To be considered for participation in the study, and experience some of the following symptoms:

     * Chronic diarrhea or constipation
     * Bloating
     * Gas
     * Abdominal pain

Research volunteers will receive study medication and medical care at no cost to the family.

To find out mare about the study as well as additional inclusion/exclusion criteria, please contact Norman Brule, 916-734-7732.

3. Article F:

The Age of Autism:

'A pretty big secret' and the QUESTION OF THE YEAR

By DAN OLMSTED - UPI Senior Editor

It's a far piece from the horse-and-buggies of Lancaster County, Pa., to the cars and freeways of Cook County, Ill.

But thousands of children cared for by Homefirst Health Services in metropolitan Chicago have at least two things in common with thousands of Amish children in rural Lancaster: They have never been vaccinated. And they don't have autism.

"We have a fairly large practice. We have about 30,000 or 35,000 children that we've taken care of over the years, and I don't think we have a single case of autism in children delivered by us who never received vaccines," said Dr. Mayer Eisenstein, Homefirst's medical director who founded the practice in 1973. Homefirst doctors have delivered more than 15,000 babies at home, and thousands of them have never been vaccinated.

The few autistic children Homefirst sees were vaccinated before their families became patients, Eisenstein said. "I can think of two or three autistic children who we've delivered their mother's next baby, and we aren't really totally taking care of that child -- they have special care needs. But they bring the younger children to us. I don't have a single case that I can think of that wasn't vaccinated."

The autism rate in Illinois public schools is 38 per 10,000, according to state Education Department data; the Centers for Disease Control and Prevention puts the national rate of autism spectrum disorders at 1 in 166 -- 60 per 10,000.

"We do have enough of a sample," Eisenstein said. "The numbers are too large to not see it. We would absolutely know. We're all family doctors. If I have a child with autism come in, there's no communication. It's frightening. You can't touch them. It's not something that anyone would miss."

No one knows what causes autism, but federal health authorities say it isn't childhood immunizations. Some parents and a small minority of doctors and scientists, however, assert vaccines are responsible.

This column has been looking for autism in never-vaccinated U.S. children in an effort to shed light on the issue. We went to Chicago to meet with Eisenstein at the suggestion of a reader, and we also visited Homefirst's office in northwest suburban Rolling Meadows. Homefirst has four other offices in the Chicago area and a total of six doctors.

Eisenstein stresses his observations are not scientific. "The trouble is this is just anecdotal in a sense, because what if every autistic child goes somewhere else and (their family) never calls us or they moved out of state?"

In practice, that's unlikely to account for the pronounced absence of autism, says Eisenstein, who also has a bachelor's degree in statistics, a master's degree in public health and a law degree.

Homefirst follows state immunization mandates, but Illinois allows religious exemptions if parents object based either on tenets of their faith or specific personal religious views. Homefirst does not exclude or discourage such families. Eisenstein, in fact, is author of the book "Don't Vaccinate Before You Educate!" and is critical of the CDC's vaccination policy in the 1990s, when several new immunizations were added to the schedule, including Hepatitis B as early as the day of birth. Several of the vaccines -- HepB included -- contained a mercury-based preservative that has since been phased out of most childhood vaccines in the United States.

Medical practices with Homefirst's approach to immunizations are rare. "Because of that, we tend to attract families that have questions about that issue," said Dr. Paul Schattauer, who has been with Homefirst for 20 years and treats "at least" 100 children a week.

Schattauer seconded Eisenstein's observations. "All I know is in my practice I don't see autism. There is no striking 1-in-166," he said.

Earlier this year we reported the same phenomenon in the mostly unvaccinated Amish. CDC Director Dr. Julie Gerberding told us the Amish "have genetic connectivity that would make them different from populations that are in other sectors of the United States." Gerberding said, however, studies "could and should be done" in more representative unvaccinated groups -- if they could be found and their autism rate documented.

Chicago is America's prototypical "City of Big Shoulders," to quote Carl Sandburg, and Homefirst's mostly middle-class families seem fairly representative. A substantial number are conservative Christians who home-school their children. They are mostly white, but the Homefirst practice also includes black and Hispanic families and non-home-schooling Jews, Catholics and Muslims.

They tend to be better educated, follow healthier diets and breast-feed their children much longer than the norm -- half of Homefirst's mothers are still breast-feeding at two years. Also, because Homefirst relies less on prescription drugs including antibiotics as a first line of treatment, these children have less exposure to other medicines, not just vaccines.

Schattauer, interviewed at the Rolling Meadows office, said his caseload is too limited to draw conclusions about a possible link between vaccines and autism. "With these numbers you'd have a hard time proving or disproving anything," he said. "You can only get a feeling about it.

"In no way would I be an advocate to stand up and say we need to look at vaccines, because I don't have the science to say that," Schattauer said. "But I don't think the science is there to say that it's not."

Schattauer said Homefirst's patients also have significantly less childhood asthma and juvenile diabetes compared to national rates. An office manager who has been with Homefirst for 17 years said she is aware of only one case of severe asthma in an unvaccinated child.

"Sometimes you feel frustrated because you feel like you've got a pretty big secret," Schattauer said. He argues for more research on all those disorders, independent of political or business pressures.

The asthma rate among Homefirst patients is so low it was noticed by the Blue Cross group with which Homefirst is affiliated, according to Eisenstein.

"In the alternative-medicine network which Homefirst is part of, there are virtually no cases of childhood asthma, in contrast to the overall Blue Cross rate of childhood asthma which is approximately 10 percent," he said. "At first I thought it was because they (Homefirst's children) were breast-fed, but even among the breast-fed we've had asthma. We have virtually no asthma if you're breast-fed and not vaccinated."

Because the diagnosis of asthma is based on emergency-room visits and hospital admissions, Eisenstein said, Homefirst's low rate is hard to dispute. "It's quantifiable -- the definition is not reliant on the doctor's perception of asthma."

Several studies have found a risk of asthma from vaccination; others have not. Studies that include never-vaccinated children generally find little or no asthma in that group.

Earlier this year Florida pediatrician Dr. Jeff Bradstreet said there is virtually no autism in home-schooling families who decline to vaccinate for religious reasons -- lending credence to Eisenstein's observations.

"It's largely non-existent," said Bradstreet, who treats children with autism from around the country. "It's an extremely rare event."

Bradstreet has a son whose autism he attributes to a vaccine reaction at 15 months. His daughter has been home-schooled, he describes himself as a "Christian family physician," and he knows many of the leaders in the home-school movement.

"There was this whole subculture of folks who went into home-schooling so they would never have to vaccinate their kids," he said. "There's this whole cadre who were never vaccinated for religious reasons."

In that subset, he said, "unless they were massively exposed to mercury through lots of amalgams (mercury dental fillings in the mother) and/or big-time fish eating, I've not had a single case."

Federal health authorities and mainstream medical groups emphatically dismiss any link between autism and vaccines, including the mercury-based preservative thimerosal. Last year a panel of the Institute of Medicine, part of the National Academies, said there is no evidence of such a link, and funding should henceforth go to "promising" research.

Thimerosal, which is 49.6 percent ethyl mercury by weight, was phased out of most U.S. childhood immunizations beginning in 1999, but the CDC recommends flu shots for pregnant women and last year began recommending them for children 6 to 23 months old. Most of those shots contain thimerosal.

Thimerosal-preserved vaccines are currently being injected into millions of children in developing countries around the world. "My mandate ... is to make sure at the end of the day that 100,000,000 are immunized ... this year, next year and for many years to come ... and that will have to be with thimerosal-containing vaccines," said John Clements of the World Health Organization at a June 2000 meeting called by the CDC.

That meeting was held to review data that thimerosal might be linked with autism and other neurological problems. But in 2004 the Institute of Medicine panel said evidence against a link is so strong that health authorities, "whether in the United States or other countries, should not include autism as a potential risk" when formulating immunization policies.

But where is the simple, straightforward study of autism in never-vaccinated U.S. children? Based on our admittedly anecdotal and limited reporting among the Amish, the home-schooled and now Chicago's Homefirst, that may prove to be a significant omission.

The Age of Autism: Question of the year

By DAN OLMSTED UPI Senior Editor

This was the year Big Media pitted parents against experts over whether vaccines cause autism -- and decided the experts are right. But they may have forgotten to ask an embarrassingly obvious question.

In its new issue on medicine in 2005, Time weighs in: "The idea that childhood vaccinations might lead to autism has gained currency among some concerned parents, fueled by unsubstantiated reports on the Internet. ... Most scientists are convinced that the shots are safe."

There you have it -- a more telling summary perhaps than Time intended. This was the year of "Parents vs. Research," as the equally estimable New York Times put it in a front-page headline in June.

But beneath this seemingly intractable fault line, the earth has been shifting. One major temblor: The April book "Evidence of Harm" by David Kirby, which painted those parents as armed not just with eyewitness accounts but their own critique of the experts' conflicts and flaws.

In our last column we summarized our take on the issue this way: If you're going to tell those parents it's time to shut up and leave the science to the scientists, where is the simple, straightforward study of autism in never-vaccinated U.S. children?

Given the sheer certitude of federal health authorities and mainstream medical groups such as the American Medical Association and the American Academy of Pediatrics, we were surprised we couldn't find comparisons between real-live American kids who've gotten vaccines, and those who haven't. Officials say such a study would be hard to do, in part because so many kids are vaccinated that you couldn't find a "control group" of kids who aren't.

We found tens, perhaps hundreds of thousands.

Our search started among the mostly unvaccinated Amish in Pennsylvania, Ohio and Indiana; moved on to homeschooling families who choose not to vaccinate for religious religions, and wound up in Chicago, where we reported on a medical practice with thousands of unvaccinated children.

We didn't find much autism.

That "finding" -- we use quotes because we know it's not scientific -- has fallen on deaf ears, at least as far as the rest of the media is concerned. Time, the New York Times, the Washington Post -- no major newspaper or magazine has so much as paused to wonder whether never-vaccinated Americans have autism at anywhere near the rate of the rest of the population.

Two exceptions: Robert F. Kennedy Jr., in an article in Rolling Stone and on Salon.com, cited the Amish. And Daniel Schulman, in a groundbreaking piece in the Columbia Journalism Review, did the same thing while portraying the media as perhaps too willing to treat what the "experts" say as revealed truth.

While most journalists seem oblivious to the issue, it continues to resonate with those who suspect vaccines -- perhaps via the mercury-based preservative thimerosal -- triggered an autism epidemic:

-- "Those of you who have been following me over the years know that my mantra has always been that there are almost no vaccine safety or efficacy studies using never vaccinated children as controls," wrote Sandy Mintz at vaccinationnews.com. "It has long been my hope that I would somehow be able to make that point to the right person or persons, to appeal to someone who might have the ability to seriously address the problem."

Mintz got her chance at a congressional hearing in 2002.

"Hi. My name is Sandy Mintz. I am from Anchorage, Alaska. I am lucky enough not to have a child who has been injured by a vaccine. My question is, is NIH (National Institutes of Health) ever planning on doing a study using the only proper control group, that is, never vaccinated children?"

Dr. Steve Foote of NIH responded: "I am not aware of -- but note carefully what I said, that 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."

In her Web posting, Mintz disagreed:

"1) There are more than enough never vaccinated children in the states which allow philosophical exemptions to conduct a proper study.

"2) If children who have not been vaccinated are different in ways that prevent them from getting autism, wouldn't we want to know that?

"Well, wouldn't we?"

-- "There have never been any large, prospective, long-term studies comparing the long-term health of highly vaccinated individuals versus those who have never been vaccinated at all," Barbara Loe Fisher of the National Vaccine Information Center wrote in Mothering Magazine last year.

"Therefore, the background rates for ADHD, learning disabilities, autism, seizure disorders, asthma, diabetes, intestinal bowel disorders, rheumatoid arthritis, and other brain and immune-system dysfunction in a genetically diverse unvaccinated population remains unknown."

-- "Why hasn't the most obvious research been done -- that is, assess the incidence of autism in unvaccinated children?" wrote Illinois autism activist Dr. David Ayoub this fall.

-- Kennedy, in a white paper called "Tobacco Science and the Thimerosal Scandal," quotes University of Kentucky chemistry professor Boyd Haley as saying, "If the CDC were really interested in uncovering the truth, it would commission epidemiological studies of cohorts who escaped vaccination, most obviously the children of Jehovah's Witnesses, Christian Scientists or the Amish."

Instead, Kennedy said, the CDC has "worked furiously to quash such studies" and prevent access to its own vaccine safety database -- a charge the CDC denies. Kennedy said he asked an official at the Institute of Medicine -- which last year rejected a vaccines-autism link -- why it didn't encourage those studies rather than recommend research money be redirected.

"That's a great idea, no one has ever suggested it before," Kennedy quoted the official as saying. Kennedy commented: "That statement is incredible. ... The idea of finding an uncontaminated U.S. cohort is Science 101. ... In fact, Dr. Boyd Haley has repeatedly urged IOM and CDC to conduct such a study, including at two public and tape-recorded meetings."

All these people are saying the same thing: Given the stakes, where's the study? This winter the government wants all pregnant women and 6-to-23-month-olds to get flu shots, most of which contain thimerosal.

What's more, as we pointed out in our last column, tens of millions of children worldwide are being injected with thimerosal-containing vaccines every year, largely due to the reassurances of U.S. public health authorities and allied experts like the IOM.

Maybe 2006 will be the year journalists ask them about the autism rate in never-vaccinated American kids. That would be the question of the year.

3. Article G:

Wealth Effect A Hedge-Fund Titan's Millions Stir Up Research Into Autism

James Simons Taps Big Stars From Outside Field to Find A Genetic Explanation
Three Personal DNA Tests
By ANTONIO REGALADO
Staff Reporter of THE WALL STREET JOURNAL – FRONT PAGE ARTICLE

When their daughter Audrey was just a few months old, Jim and Marilyn Simons noticed that she wasn't making eye contact. It wasn't until the girl was 6 years old that she was diagnosed with autism. Ms. Simons scoured records from her pregnancy. Had something gone wrong? What caused her condition?

In their quest for answers, the Simonses aren't just another family seeking comfort. Audrey's father, world-class mathematician James H. Simons, runs Renaissance Technologies Corp., one of the world's most successful hedge funds. With little notice, the family's charitable foundation has in the past two years committed $38 million to find the causes of autism. The money manager says he and his wife will spend $100 million more in what is rapidly becoming the largest private investment in the field.

The Simonses' philanthropy is stirring up the small community of autism researchers and advocates. Using his scientific background, Mr. Simons, 67, personally reviews grant applications. When the Massachusetts Institute of Technology asked him for money for brain research, he demanded that the project focus on autism and include scientists he liked. He has provided his family's DNA for study, pitched in to help solve research problems and is pushing scientists to probe a genetically based explanation for the disease.

Mr. Simons is picking star researchers from other specialties -- "Nobel Prize winners and future Nobel Prize winners," he says -- often passing over established autism groups or those with differing theories. Last month he lured a top Columbia University neurobiologist, Gerald Fischbach, to work part-time leading the foundation's scientific strategy.

In science, as with certain types of financial data, "past performance is the best predictor of success," Mr. Simons says.

For most in the autism field, the money manager remains a question mark, an idiosyncratic billionaire rarely seen or heard from, whose impact on the field is still unclear. Like many other wealthy donors these days, Mr. Simons is acting more like a venture capitalist, exerting extraordinary control over where and how his money is spent. Many are cheering this influx of cash, hoping Mr. Simons's riches can buy a breakthrough. Others complain that Mr. Simons isn't working with existing autism groups and that his focus on finding a genetic explanation could miss the disease's true cause.

Autism is a developmental disorder that exhibits a range of perplexing symptoms, including failure to develop language skills and lack of empathy for others. According to the federal government's Centers for Disease Control and Prevention, between one and three of every 500 children are afflicted with some form of the disease.

It's an apparent epidemic for which experts have few explanations. In the highly charged atmosphere surrounding the subject, some parents insist childhood vaccines or mercury poisoning is to blame. They cite a startling rise in the number of children being diagnosed, up tenfold over the past decade. Many experts say this phenomenon is explained by the expanding use of the autism label by doctors and schools.

Another challenge: What doctors call autism is likely to be several related disorders. Some autistic children can't speak and throw violent tantrums, while others have relatively high IQ's. Some say that understanding the disease could be as difficult as understanding the brain itself.

Autism researchers lack a "good solid clue," says Thomas Insel, head of the mental-health institute at the government's National Institutes of Health. The doctor adds: "We have no lesion. We don't know what systems in the brain are involved. So we are at the very early stages. It's like cancer or diabetes research 25 years ago."

Mr. Simons thinks there's no compelling evidence for some parents' contention that autism is caused by vaccines or some other environmental factor. "People want an answer and people want a villain, the evil drug companies or whatever," says Mr. Simons. He says the only thing he believes for sure is that genes play a big role.

It's a propitious moment to step into the field, observers say. Scientists have already mapped the complete human genome, the three billion units of DNA that define humans as a species. Combined with new high-tech tools, this makes gene searches easier and faster to perform, even for complex mental illnesses. Moreover, government funding for research into autism, while growing, still trails that for less-common diseases such as juvenile diabetes and pediatric AIDS. Dr. Insel predicts that genetic clues will begin spilling out quickly, giving scientists a beachhead from which they can begin thinking about tests or drugs.

Mr. Simons is well-known in mathematics circles for co-authoring a high-level piece of geometry known as Chern-Simons. It has since become important in string theory, the advanced branch of physics that posits a "theory of everything." He started young and earned a doctorate in mathematics at 23. He also proved to be a precocious investor. While in college, Mr. Simons persuaded his parents to mortgage their home so he could invest along with some college friends in a pipe-and-tile company in South America. Mr. Simons says the venture was "nicely successful."

Astronomical Returns
By the mid-1970s, Mr. Simons moved from academia to Wall Street, with spectacular results. His hedge fund employs more than 60 top scientific specialists, including astronomers, physicists and mathematicians, who scour market data to uncover statistical relationships that could predict the price movements of commodities, currencies and stocks. His $5 billion Medallion Fund has averaged 35% annual returns, after fees, since 1989. That beats even hedge-fund legends George Soros and Paul Tudor Jones, according to the U.S. Offshore Funds Directory.

Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet. [Audrey Simons] Mr. Simons earned $670 million last year, according to Institutional Investor's Alpha magazine. He declines to confirm the figure, which would rank him second among hedge-fund managers, behind Edward Lampert of ESL Investments, according to the Alpha survey. The Simonses live in a sprawling apartment on New York's Fifth Avenue filled with art by painters such as Milton Avery and Fairfield Porter.

Renaissance is now launching a fund designed to handle up to $100 billion, which, if successful, could become the industry's largest. Like the $100 million he says he'll spend on autism, it's an eye-popping figure. "I like big round numbers. The papers call me the $100 billion guy," says Mr. Simons, between puffs of a Parliament cigarette.

As the Simons family's wealth grew, their daughter's condition became more widely known. Audrey, who is now 19, has a mild form of autism. She started college classes in Manhattan this year but it isn't easy for her, her parents say. She has difficulty learning and misses social cues.

One hallmark of autism is having restricted or obsessive interests. Audrey's are attending synagogue and the rights of minorities and women. "When she writes an essay for school, I usually just tell her to write one version all about Judaism and women to get it out of her system," Ms. Simons, her mother, says.

In an email, Audrey says of her autism that she does "not have as many problems because of it as some other people do." She says she wants to be a novelist and a painter as well as someone who can contribute to the Jewish world and work on behalf of Nepalese women and children.

After Ms. Simons gave a donation to a New York school for autistic children," people began asking us for money" to pay for research, she says. With the help of a consultant, the Simonses hosted an autism workshop at New York's Plaza Hotel in June 2003, lining up a guest list of renowned academic figures.

Mr. Simons says his "take-away" from the meeting was that scientists had only one solid lead, and that was from studies on identical twins that began 20 years ago. Doctors have found that if one twin has autism, the other has a 90% chance of having some symptoms. For non-twin siblings, the chance falls to between 5% and 10%. That suggests genes play a key role, although not necessarily a s