TACA E-News

2 General News

2. Article A: US survey shows autism very common

By Maggie Fox, Health and Science Correspondent 1 hour, 42 minutes ago

WASHINGTON (Reuters) - The first national surveys of autism show the condition is very common among U.S. children -- with up to one in every 175 with the disorder, the U.S. Centers for Disease Control and Prevention said on Thursday.

This adds up to at least 300,000 U.S. schoolchildren with autism, a condition that causes trouble with learning, socializing and behavior, CDC said.

The CDC analyzed data on 24,673 children whose parents took part in two separate government surveys on health in the United States to generate its first national estimate of the prevalence of autism.

"Together, these two national surveys of parents indicate that at least 300,000 children aged 4 to 17 years old had autism in 2003-04," the CDC said in the report.

The surveys came up with similar results -- that autism has been diagnosed in anywhere between 5.5 per 1,000 and 5.7 per 1,000 children aged 4 to 17. This translates to between one in every 175 to one in every 181 children.

"(The surveys) affirm that autism is a condition of major public health concern that affects many families," Dr. Jose Cordero, director of CDC's National Center on Birth Defects and Developmental Disabilities, told reporters in a telephone briefing.

He said the findings fit in with previous estimates of autism, which were based on local surveys done in Atlanta and New Jersey.

The 1996 Metropolitan Atlanta Developmental Disabilities Surveillance Program survey showed autism had been diagnosed in 3.4 per 1,000 of the 3- to 10-year-olds included, or one in every 296. The 1998 Brick Township, New Jersey survey showed a rate of 6.7 per 1,000 children of the same age, or one in every 166.

None of the surveys pointed to a cause for autism -- a matter of deep controversy in the United States. Some groups have accused the CDC of covering up data that would link autism with vaccines, although studies in several countries have discounted such a link.

"We recognize that parents want answers," Cordero said.

"If children have autism, parents want to know what caused it and how they can lower this risk if they have other children. We share their frustration."

NO TRENDS

While there were some differences among age groups, the CDC said the differences were not statistically significant.

"Both surveys indicated that boys were nearly four times more likely to have been diagnosed with autism than girls," the CDC said in the report, published in its weekly report on death and disease.

"Both surveys indicated that Hispanic children were less likely to have an autism diagnosis." The survey could not indicate why that might be.

Laura Schieve, an epidemiologist at the National Center on Birth Defects and Developmental Disabilities who helped conduct the study, said the study could not answer many questions about autism.

"Although often autism can be identified as early as 18 months, many children will not be diagnosed until they get to school," she told the briefing.

And parents of older children could easily have forgotten an early childhood diagnosis, she said.

"After children have received treatment for an extended time, they may show fewer symptoms of autism," she added.

"Also the criteria for autism have been broadened slightly."

Washington Posts’ Take on the SAME STORY:
300,000 Children in U.S. Found to Have Autism

By Shankar Vedantam
Washington Post Staff Writer
Friday, May 5, 2006; A09

About 300,000 American children have been diagnosed as having autism, according to the first comprehensive national surveys of the developmental disorder.

Boys were four times more likely than girls to have the disorder, which is characterized by verbal, social and emotional problems. White families with higher incomes were also more likely to report having children with the disorder, a fact that federal experts said probably reflected unequal access to medical services.

The new data came in two surveys released yesterday by researchers at the Centers for Disease Control and Prevention, who said the numbers matched the range found by earlier studies that looked at smaller groups of people.

Autism has been dogged by controversy for more than a decade after what appeared to be a sharp increase in diagnoses in the 1990s. Many experts believe the increase reflects changes in diagnostic criteria adopted in 1994, increased public awareness of the problem, and the difficulties in telling apart a number of overlapping conditions that fall under an umbrella known as autism spectrum disorders. Some advocates have blamed a mercury-based preservative in children's vaccines, even though repeated analyses have failed to confirm a link.

The new surveys show that Hispanics have a much lower autism rate than whites, but experts said that this probably reflected differences in access to care.

"This does provide important results on the need to consider autism may be under-diagnosed in certain populations," said Laura Schieve, an epidemiologist at the National Center on Birth Defects and Developmental Disabilities, at a teleconference organized by CDC.

Schieve and José Cordero, director of the birth defects center, said both surveys showed some differences in autism prevalence by age group -- with children ages 6 to 11 more likely to be diagnosed than those ages 4 to 5. However, they said the differences were not statistically meaningful and could not address whether the decision to phase out the mercury-based preservative from children's vaccines in 1999 had led to a leveling off or fall in autism diagnoses.

Cordero said it was far more likely that the age-group differences in prevalence reflected the fact that many children are not diagnosed until they enter school and teachers recognize the problem. That means the number of diagnoses among the 4-to-5-year-olds in the surveys could rise as they enter school.

"Let's do it again next year and the year after," said Gary Goldstein, president and CEO of the Kennedy Krieger Institute at Johns Hopkins University, which has a large autism research program. "My prediction is you are going to see a rise in the younger ones. If it was going away, which I would love, you would see a falling number."

Goldstein said the racial and class differences in diagnoses reflected the fact that getting a diagnosis often requires that parents be effective advocates, at least in the years before children arrive in school.

"It's not like leukemia or a broken bone where a diagnosis will be made no matter what your social class is," said Goldstein, who is also a board member at Autism Speaks, an advocacy group focused on research and awareness. "You have to be an advocate."

Peter Bell, chief executive of the advocacy group Cure Autism Now Foundation, said the fact that some children do not get diagnosed before they reach school was troubling. Early diagnosis, he said, allows for early interventions, which are more effective.

Two local researchers who have long claimed there is a link between the mercury additive thimerosal and autism said the CDC numbers suggest there is a connection. Mark and David Geier, a father-son team, said at the very least the CDC data showed a leveling off in autism diagnoses.

"In early 2003, we looked at a number of databases and how much mercury children were getting from their shots, and we said there is a causal relationship between thimerosal and autism," David Geier said. "Thimerosal started to be removed in July 1999. We predicted the rates of autism would begin to decrease. What we are seeing is decreasing trends. It coincides with children getting less mercury in their shots."

Response from Safe Minds

CDC Autism Prevalence Findings

Consistent with Vaccine Merucy Role in Autism Increase

CDC tries to explain away rise in disorder, but SafeMinds review shows the numbers are clear on epidemic

The Centers for Disease Control and Prevention (CDC) in Atlanta released new figures showing the alarming prevalence of autism in this country, with about 1 in 175 school aged children having an autism diagnosis. However, a review of the study by SafeMinds has found that the CDC’s interpretation of their own numbers is missing half the story – the half that says that the dramatic rise in autism in the 1990s is real and corresponds to the increased exposure to mercury from infant vaccines.

“The study, while valuable in showing that autism rates are high, also substantiated that the rate of autism has increased during the 1990s, and that the rate of autism among children born after 1992 are at epidemic proportions of 6.8-7.6 cases per thousand,” said SafeMinds Executive Director Sallie Bernard. The rate of autism among children in the study born 1986- 1992 were much lower, 4.1-4.6 cases per thousand, about 3/5 the rate of the children born after 1992. “The rise in autism rates for children born after1992 as compared to those born between 1986 and 1992 corresponds to increased exposures from mercury in infant vaccines. Two new mercury- containing vaccines were added to the infant schedule in 1990-1991, and it is after this time period that the rate in autism increased dramatically.”

During its press conference on the study findings, the CDC tried to explain away the increase, saying autism trends could not be derived from the study and that the higher rate of autism among children born from1992 onward could be due to broadening of diagnostic criteria or to the older children losing their autism diagnosis. These excuses are disputed by SafeMinds and other autism organizations. The differences in prevalence rates between the age groups of the study are statistically significant, meaning they are unlikely to have occurred by chance, so the study does have value in understanding autism trends. There is no evidence that changes in diagnostic criteria would have effected children born 1986-1992 less than those born after 1992. Historically, only 10%-15% of autistic children later lose their diagnosis, not enough to explain the huge differences in prevalence between older and younger age groups.

“The CDC does not want to acknowledge the increase in autism because it implicates mercury in vaccines,” explained Bernard. “The CDC is in charge of vaccine safety, so proof of harm from vaccines reflects poorly on them. Looking at the way they have spun these results, they have dropped the ball again in their handling of the autism epidemic.”

2. Article B:

'I have four autistic sons and no sleep'

By Jane Elliott
BBC News health reporter

Jacqui Jackson has not had a proper night's sleep for years.

Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet. The Jackson family
Jacqui's four boys are autistic

She is the mother of seven children, ranging from nine to 23 years old, four of whom have some form of autism.

Jacqui, whose story was featured in a TV documentary, is used to going for nights without any sleep at all. On other nights she cat naps for two or three hours at a time.

"Physically it does take its toll," she says. "It gets you down and it affects how you work.

"I am doing a PHD into sensory issues in autistic children and I find it very hard to write my thesis when I am so tired.

Remedies

"We have tried everything to improve the children's sleep patterns, from drugs to homeopathy and massage. I have tried everything I can.

"One thing that did have a slight effect was melatonin, but nothing worked well or for long."

Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet. Jacqui Jackson
I am not superwoman, but I can go on with two or three hours a night, sometimes without any sleep at all

Jacqui Jackson

Luke, aged 18 has Aspergers Syndrome and has erratic sleep patterns. When he was younger he slept during the day, even now his sleeping is fitful.

Ben, who is aged nine and autistic, has still not slept for a full night.

Joe, aged 13 has ADHD and sleeps soundly once asleep, but Jacqui said it takes a lot of time to get him to drop off.

And Matthew, who is 23, who has milder autism, had and still has problems sleeping.

"I am not superwoman, but I can go on with two or three hours a night, sometimes without any sleep at all. But they need 24-hour care. "They have food allergies, and without somebody watching them they will go rampaging around the kitchen. "We have alarms on all the doors and on the medicine cabinets," she said.

"We live in a bungalow and the boys sleep downstairs and the three girls upstairs.

"They have locks on their doors and because of all the noise they can now sleep through anything."

Sleep

Although Jacqui's family's situation is so severe, studies have shown that of the 500,000 people on the autistic spectrum in the UK most have some sort of sleep problems.

Over a third of them suffer from serious sleep problems that are debilitating for their families, partners and carers.

Now Research Autism has set up a forum to get parents, carers and experts together to try and share experiences and see if they can find solutions.

The first meeting was held this month and there are hopes to have similar meetings twice a year.

Sleep deprivation is used as a form of torture by some regimes

Richard Mills

"They are hoping to help offer practical solutions for different sleep patterns," Jacqui explained.

Richard Mills, director of research for the National Autistic Society and Research Autism, said solving sleep problems was vital to promote well-being.

"We are talking about people having only three or four hours sleep a night.

"Others can be awake at night and asleep during the day, some go without sleep for days and others sleep so much they can not be roused.

"What we are trying to do with this forum is to bring people together with people who might be able to help them."

He said it was vital to remember that the problem also affected adults with autism as well as children.

"This could be people in their 40s and 50s who have had these problems all their lives and have not got better.

"No one thing seems to be effective for everyone, but what we are hoping to do is to look at the problem in its entirety."

Torture

He said it was important that the problem was tackled urgently.

"After all sleep deprivation is used as a form of torture by some regimes," he said.

Jacqui Jackson said she was not expecting the forum to come up with an immediate solution to her family's sleep problems, but she did hope to be able to share her tips on sleep management in the hope of helping others.

"I can tell them about a myriad of things that might work for them. What is not working for my boys could work for other people."

Editors note: TACA has 2 families like this one in our group.
IF anyone has children with prolonged sleep issues there are biomedical remedies and treatments that can help.

2. Article C:

Why M.I.N.D. Matters

Printed in Southwest Airlines Magazine:

How a group of determined parents did the impossible and helped form one of the leading autism research facilities in the country. by Gary Delsohn

Chuck Gardner will never forget what his good friend Rick Rollens told him after Gardner asked for advice about how to approach officials at the University of California, Davis, with his dream of creating a world-class research and treatment center for autism.
“You’re wasting your time,” Rollens said during that 1996 conversation. “It’s never going to happen. I’ve worked with the UC system, and it will never happen in our lifetime. It takes them 10 years to decide whether to build a parking garage.”

Both men — Gardner, who is a business owner in Sacramento, and Rollens, then secretary of the California Senate — had young sons who have the often-debilitating brain malady known as autism. The two men and their wives had been everywhere searching for help. They were long past desperate for something, anything, that could provide hope or relief.

It’s a good thing Gardner didn’t take Rollens’ pessimism to heart. He says now that he didn’t know better at the time. That four years of sleepless nights while he and his wife, Sarah, kept constant vigil over their son, Chas, a handsome boy with no verbal skills but an uncanny ability to hurt himself and turn their household upside down, made him crazy enough to think even the impossible was possible.

With the help of another friend, Gardner got his meeting with officials at the UC Davis Medical Center, which is on the old State Fair grounds in Sacramento. Even though they established some ground rules that seemed impossible to meet — like come see us again when you’ve raised $5 million in private funds — Gardner remained undeterred. As a result, the Medical Center campus today boasts what experts say is the leading autism research facility in the nation, if not the world.

It’s housed in a gorgeous 100,000 square-foot, state-of-the-art building that cost $42 million to build and is designed so thoughtfully that The Wall Street Journal wrote a separate story about its architeture. It ran under the sub headline “Can a Building Help Cure a Disease?” Officially open since 2003, just seven years after Gardner and Rollens first talked about the pipe dream of an idea, the center boasts a full-time staff of 260 and has already conducted several groundbreaking research
projects. The center’s most recent undertaking: an ambitious autism study that is expected to radically change how the dis- ease is diagnosed and treated. All because a small group of parents demanded action and took matters into their own hands when they weren’t satisfied with what they were getting.

The story of how Gardner, Rollens, and a small cadre of extraordinarily frustrated but determined Sacramento parents achieved their quixotic goal is almost as dramatic as the groundbreaking research being conducted at the facility. It’s called the M.I.N.D. Institute, for Medical Investigation of Neuro- developmental Disorders. Even the federal government says it represents the best hope anywhere for a cure and answers about how to prevent and treat this perplexing brain disorder. It wasn’t that long ago, after all, that autism was believed to be caused by so-called refrigerator mothers, too cold to properly nurture and develop their children. The common advice from doctors to parents was find a place to institutionalize your child. You’ll never reach him.

Now we at least know it’s a brain malady, that some children are born with it and others contract it somehow in their first few years of life, maybe by exposure to infant vaccines preserved with the mercury-based substance known as thimerosal. And there are treatments that help. Chas Gardner goes to a school for kids with autism that his father and two partners built and co-own. He’s learning independent living skills, such as how to order food at McDonald’s and motion toward things he wants. Just a few years ago, this was a disease believed to affect one in 10,000 kids. Now, according to the federal Centers for Disease Control and Prevention, it afflicts as many as one in 166 children who have some degree of autism spectrum disorder. The CDC estimates that if 4 million children are born in the United States each year, about 24,000 will be diagnosed with autism. Because most of the known patients with autism are under the age of 18, many experts say this is a medical and social time bomb as these kids get older and become far more dependent on society at large to care for them.

“I would say that the M.I.N.D. Institute is really the hope for people with autism,” Dr. Thomas Insel, director of the National Institute of Mental Health, said in a recent interview. “What parents need most of all is hope for a breakthrough, and this is the place in the country that is totally committed to finding that breakthrough. It’s so impressive to learn that families got this facility started because they were so intent on trying to solve the problem with more research. They’ve created a place that is really a focal point of scientific effort, almost a Manhattan Project, to try to understand the reason for this disease, how to prevent it, and how to treat it better.”

Gardner, Rollens, and the four other men known as the center’s “Founding Fathers” know work at the M.I.N.D. Institute may come too late to make a dramatic impact on the lives of their sons, now young teenagers. One founder, trucking company owner Steve T. Beneto, has a son with autism in his 40s who has been living away from home in an around-the-clock care center for years. But the families remain fully engaged in the institute’s work, mission, and future. Gardner is running the center’s new fund-raising drive.

“You never know if something is going to come out of it that will help Chas,” Sarah Gardner, a Sacramento television news anchorwoman and Chuck’s wife, says with a sigh. “But we have so many friends who have kids with autism. No child or family should suffer like this. The reality is that every day that passes, Chas gets further away from a cure. But we’re going to continue to be unrealistic and think there’s something out there that will help him. We’re prepared to take that hope to our grave if that’s how it goes.”

The project started with Chuck Gardner’s frustration and his ability to network with other fathers who saw their families strain and creak under the intense pressure of having a child with autism. For some reason scientists don’t yet understand, autism is far more prevalent in boys than girls. Boys have it more than girls by a ratio of four-to-one.

For the most part, the moms of the boys were home dealing with their tantrums, trying to get them to eat, learn, sit still, and not harm themselves or their siblings while the dads were out scouring for help. “We’re dads,” Rollens has said many times. “When something goes wrong, we’re supposed to try and fix things.”

Gardner was stunned to learn that so-called experts at one clinic where autism was treated didn’t know what scientists at
another center were working on. They often didn’t even know about studies and facts Gardner and some of his friends who have children with autism had found on their own. Chas had been diagnosed at about 2 and was 4 when Gardner had his meeting with the university. At the time, he and his wife were very frustrated.

Even as a baby, Chas hated to be held. He didn’t talk or look directly at someone who was talking to him. Almost anything could set off wild, often violent tantrums. A few years ago, while Chuck was sitting on the fireplace mantel watching Chas, Chuck turned away and Chas stuck his leg into the burning fire. His pajamas ignited, and he suffered second-degree burns. When he eats, Chas likes to cram whatever he has in front of him into his mouth all at once because he craves the sensation of a full mouth, making his parents experts on the Heimlich maneuver. When his younger sister, Ginny, wants to have a friend over to play, the logistics can be nearly impossible.

“People say to us all the time, ‘Isn’t it time you found a place for him and had him institutionalized?’ ” Sarah says. “That’s all well and good. You try to pack his bags and put his favorite things in there.”

At a conference he attended, Chuck mentioned to Dr. Louis Vismara, a prominent (and now retired) Sacramento cardiologist whose now-13-year-old son Mark has autism, what the university officials had told him about the need to raise $5 million to have even a prayer of getting anything serious started at UC. Even then, all they promised was a couple of endowed professor’s chairs at the medical school, nothing like a full-blown center devoted primarily to autism.

Vismara had been practicing medicine in Sacramento for years, and he had quite a few wealthy patients. Among them was Angelo Tsakopoulos, a major California developer. Tsakopoulos, who still has a hard time with his own dyslexia, couldn’t get on board fast enough.

“The logic that we spend something like $10 billion to $12 billion a year to take care of people with autism and only $50 million a year to do research is mind-boggling to me,” Tsakopoulos says. “I told Lou at the time it’s like having a building with a roof that is leaking and you spend a ton of money on buckets when you need to fix the roof. To really learn about this disease and why it affects people as it does, we need to do the research.”

Tsakopoulos kicked in $500,000. So did Beneto. Vismara put in $250,000. Another Vismara patient, Claire Massey, and her family put in $1 million at the start and recently gave the institute another $1 million. Rollens used his influence in the Legislature to get a bill passed appropriating $2 million toward the establishment of a research center then called Project Hope. In 1999, then-Governor Gray Davis, who was taken with the story of Rollens’ struggles to find relief for his son, signed legislation appropriating $40 million to help build the facility. The Medical Center donated several acres of land and added more than $20 million to the pot. In 2003, the M.I.N.D. Institute, which also includes a 27,000-square-foot lab that is the envy of other departments at the Medical Center, was formally christened. It has an annual budget of $18.9 million, which includes $3.8 million from the state.

In addition to how it was created, the center is unique because it freely mixes clinical and research space under one roof with open, flowing design. The center has one main entrance where doctors, psychologists, researchers, and administrators all enter before going off to their individual work stations. Wide stairways invite conversation. The open layout allows occupants to see one another. The soothing earthtones and dramatic artwork commissioned from artists with autism make the center an inviting place. It’s a dramatic departure from the dingy, private clinics most of these parents had been accustomed to. Parents desperate for hope can literally see the promise of science being applied to their own children. Because it is part of the UC Davis Health System, which also has one of the leading veterinary medicine schools in the country, the M.I.N.D. Institute, which has more than 3,000 clinical research visits each year, is able to take advantage of the university’s vast array of resources. On one winter morning when a reporter was being shown around, researchers were in the lab dissecting monkey brains to learn what goes into a primate’s memory system during development.

“It’s kind of exciting for us because of the phenomenon of infantile amnesia,” Jeff Bennett, a lab manager, says as he sorts through some tissue slides. “We think there could be an interesting change that happens during development that can help shed light on some of these disorders.”

The most ambitious project undertaken at the M.I.N.D. Institute and arguably the most far-reaching autism study done anywhere is what’s known as the Autism Phenome Project. Institute officials describe it as a “longitudinal study that aims to distinguish among different subgroups (or phenotypes) of autism and will link these subgroups with distinct patterns of behavior and biological changes. Assessments include family history, environmental exposures, genomics, behavior, brain structure and function, immunology, as well as protein profiles.” The aim of the project is to finally differentiate between the different types of autism and how they are caused so diagnosis and treatment can be tailored to each individual.

“At the moment, any treatment that gets used — it gets used for all kids with autism,” says David G. Amaral, a professor of psychiatry and behavioral sciences at the UC Davis School of Medicine and research director at the M.I.N.D. Institute. “Some kids respond well and some don’t, but we don’t know why. This is critical because when you have a developing child there is a window of opportunity when treatment is most valuable. You don’t want to guess. You want to get the best possible treatment at the best possible time.”

That particular window has likely closed for Chas, Mark Vismara, and Russell Rollens, who was on the cover of Newsweek in July 2000 for an article on what the magazine called “Mindblindness,” another name for the disorder. Chas’ parents admit they try not to let their minds wander to thoughts about who’ll care for Chas when they’re not around. They’re too busy with the day-to-day.

“We can cry and worry about the future when we’re older,” Sarah Gardner says. “We don’t allow ourselves to ever go over to any kind of dark side and just worry. We don’t have the time or luxury for that, and once you do, you may never find a way out. One thing I do know. Chas is not going to pass through this world without having an impact. He may not be the pro baseball player Chuck dreamed of when he was born, but because of his involvement and participation in this research, he’s going to have an impact. We will find a cure, and Chas will have played a role in that.”

Gary Delsohn was a reporter for the Sacramento Bee for 16 years.

2. Article D:

FDA to review its advisory panel system

May. 5, 2006

http://www.washingtontimes.com/upi/20060505-040210-9504r.htm

The Food and Drug Administration said Friday it is launching an internal review of it drug advisory panel system.
With pressure mounting on the agency to revise its drug-review practices to ensure that new treatments are as safe as possible before hitting the market, the FDA announced it would look into how it chooses members for its panels and how it handles possible conflicts of interest among panelists in order to establish "best practices" for the process.
As part of its probe, the FDA said it would review the processes for nominating panel members, choosing consultants with expertise specific to the meeting topic, developing competing products lists, screening for conflict of interest and using special government employees outside of an advisory committee meeting.

      The FDA's panels of medical experts hold a lot of sway in the agency's drug-approval decisions, with the agency following its panels' advice to approve or deny approval of a new drug in the vast
majority of cases.
      The agency typically goes to its panels for recommendations on new drug applications in cases where the agency is concerned about a particular safety signal in the application's clinical data or when
the potential new treatment would be the first approved in a new drug class.
      As scrutiny of the FDA's drug-safety gate-keeping mission has intensified, critics have raised concerns over the possible bias of panel members, many of whom have financial ties to drug companies. The agency's current panel system requires that panel members disclose such ties.
      In fact, last month the Journal of the American Medical Association published a study by consumer advocacy group Public Citizen showing that at least one FDA panel member disclosed a conflict of interest -- such as a contract with a drug company or grant of more than $100,000 -- in 73 percent of the 221 advisory committee meetings held from Jan. 1, 2001, to Dec. 31, 2004.

Such conflicts "have a small but important association with voting behavior," said Peter Lurie, the study's lead author and deputy director of Public Citizen's Health Research Group.

2. Article E:

Bill would make federal research public

http://www.washingtontimes.com/upi/20060503-051437-7367r.htm

May. 3, 2006

Legislation has been unveiled in the senate requiring recipients of federal research grants to post their information online.

The Federal Research Public Access Act, co-sponsored by Sens. John Cornyn, R-Tex., and Joseph Lieberman, D-Conn., would require public access within six months to research sponsored by 11 federal agencies that provide at least $100 million in outside funding per year including the departments of Agriculture, Commerce and Homeland Security as well as the Environmental Protection Agency, NASA and the National Science Foundation, the Washington Post reports.

The proposed law comes out of an extended debate over whether the results of federally funded research should be free to the public. Proponents say the availability of the information will help other researchers build on scientific advances.

Opponents say that the peer review process used by scholarly journals is essential, difficult, and expensive and could not be supported by a business model where articles are given away for free.

Last year, the National Institutes of Health launched a program encouraging research grant recipients to make their findings public within a year of publication, but only percent of researchers actually did so.

2. Article F:

Begin to help autistic children by dispelling myths

http://www.indystar.com/apps/pbcs.dll/article?AID=/20060428/LOCAL0101/604280380/-1/ZONES04

April 28, 2006

Community Voices
By Julie Krasnow
April 28, 2006

The word "autism" has become a more common term recently, due in large part to the Autism Society of America reporting that autism now affects one in 166 children.

If you don't know someone with autism, you probably will someday. April is National Autism Awareness Month.

As the autism/behavior specialist for the Carmel Clay Schools, my job is to educate others about this disability. Without proper knowledge, many people afflicted with autism often are misunderstood.

I would like to share and resolve some misconceptions and myths to help raise awareness in our community.

Myth No. 1: Autism is caused by "refrigerator mothers."

Many years ago, Dr. Bruno Bettelheim claimed that autism had a psychological causation: that the mothers of these children, intentionally or otherwise, did not love their children. The term "refrigerator mother" was born, referring to the fact that the mother was cold toward her child.

Today we know that autism is a bioneurological disorder that affects the functioning of the brain. Some theories suggest that it may be genetic, viral or caused by chemical exposure.

Myth No. 2: Autistic children show no emotion.

A common misconception is that children with autism are unloving and do not have any emotional feelings.

On the surface, this may seem to be the case because they don't always express their emotions in a way that you and I recognize. But for those of us who know a child with autism, we are aware of the ways that they show love and affection.

Myth No. 3: Children just need a good spanking

We've all been out to a grocery store or running errands when we come across a child throwing a temper tantrum, including screaming, throwing and hitting. We may wonder why parents are letting their child do this without any discipline or reprimands.

If this is a child with autism, he most likely has lost control because of sensory overload. The sounds and visual stimulation and the overwhelming crowds are just too much for this child to take in, which results in a meltdown. Parents are unrightfully blamed for not disciplining their children.

Myth No. 4: You're born with autism.

On average, autism is diagnosed at 44 months of age.

Myth No. 5: Vaccines do not cause autism.

The jury is still out on this one. Although a recent Institute of Medicine report appears to refute an association between vaccines and autism, the major autism organizations all agree that more research needs to be conducted.

A recent study suggests that children receiving vaccines containing the preservative thimerosal are many times more likely to develop autism than those who receive thimerosal-free vaccines.

Myth No. 6: Dustin Hoffman's character in "Rain Man" is typical of a person with autism.

The character in "Rain Man" was a high-functioning person with autism and also was a savant. In reality, only 2 percent of those diagnosed exhibit such savant capabilities.

Myth No. 7: The increase in the rate of autism is due to better diagnosing.

Ten years ago, the rate of autism was 1 in 10,000 births. Today it is 1 in 166. This is a 5,000 percent increase in 10 years. If this astonishing increase is due to better diagnosing, where are the thousands of autistic adults who should have received a diagnosis 10, 20 or 30 years ago?

Myth No. 8: Autism is a rare disorder.

With 1 in 166 children being diagnosed with autism, it can no longer be called rare. We have an epidemic on our hands. Every 16 minutes, another child is diagnosed with autism.

For all of us who have had the privilege of knowing, loving or working with a child with autism, we are able to see their abilities through the disability and appreciate the child within. I am pleased to report to the community that my Carmel Clay colleagues and I are working very hard to provide the best education we can for students who have been diagnosed with autism.

If you would like more information, please e-mail jkrasnow@ccs.k12.in.us or call (317) 846-3086, ext. 1247.

To write an installment, please contact us at carmelam@indystar.com or (317) 444-2600.

2. Article G:

Caring for all with autism: $35B per year

http://www.washingtontimes.com/upi/20060426-034059-2361r.htm

Apr. 26, 2006

The U.S. book "Understanding Autism: From Basic Neuroscience to Treatment" estimates it costs $3.2 million to take care of an autistic person over a lifetime.

Caring for all people with autism over their lifetimes costs an estimated $35 billion per year, says Michael Ganz, assistant professor of society, human development and health at Harvard School of Public Health, who authored the study, which appears in a chapter of the book.

Ganz's analysis of the costs includes direct and indirect medical costs associated with the disorder. But he said the $35 billion annual societal cost for caring for and treating people with autism likely underestimates the true costs because there are a number of other services that are used to support individuals with autism, such as alternative therapies and other family out-of-pocket expenses that are difficult to measure.

Ganz estimates that annual indirect costs for autistic individuals and their parents range from more than $39,000 to nearly $130,000.

"I hope that my research can help focus more attention on directing more resources toward finding prevention and treatment options for autism," Ganz said.

2. Article H:

Ten Things Every Child with Autism Wishes You Knew

By Ellen Notbohm
South Florida Parenting

The Dan Marino Center provides integrated intervention services for children with special needs - medical, emotional and/or behavioral
See larger image

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute, the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it.

The child who lives with autism may look "normal," but his or her behavior can be perplexing and downright difficult. Today, the citadel of autism, once thought an "incurable" disorder, is cracking around the foundation. Every day, individuals with autism show us they can overcome, compensate for, and otherwise manage many of the condition's most challenging aspects. Equipping those around our children with a simple understanding of autism's most basic elements has a tremendous effect on the children's journey towards productive, independent adulthood. Autism is an extremely complex disorder, but we can distill it to three critical components: sensory processing difficulties, speech/language delays and impairments, and whole child/social interaction issues.

Here are 10 things every child with autism wishes you knew.

1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.

Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp

7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

10. If you are a family member, please love me unconditionally. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.

It all comes down to three words: Patience. Patience. Patience.

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?

You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.

I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They had autism too.

Freelance writer and consultant Ellen Notbohm is a columnist for Autism/Asperger's Digest and co-author of 1001 Great Ideas for Teaching and Raising Children With Autism Spectrum Disorders (Future Horizons). She favors "common sense" approaches to raising her sons with autism and AD/HD. She lives in Oregon.

2. Article I:

TACA Executive Director Honored: Experts rewarded for furthering autism awareness


WHOLE LOTTA HEART-Recipients of the inaugural Hearts 'N' Arts Autism Awareness Awards are honored for their efforts at a recent fundraiser held in Agoura Hills. From left, Dr. Bruce Hensel, Lisa Ackerman, Drs. Robert and Lynn Koegel, and Danielle Paskowitz.

The inaugural Autism Awareness Awards were presented to several individuals whose efforts have furthered awareness of autism, a baffling disorder which affects 1 in 166 children in the United States.

The evening, a glittering event held recently in the Agoura Hills home of actor John Schneider and his wife, Elly, brought together individuals from many fields, as well as parents and autism advocates.

It was a varied group of people all joined by a common challenge, to conquer autism. Conversation buzzed as guests shared information on therapies, successes and much-needed exposure for the disorder which has been dramatically on the rise in recent years.

Nicki Fisher, editor of "Tap: The Autism Perspective" magazine, presented the awards.

Those honored included Drs. Robert and Lynn Koegel of the UC Santa Barbara Koegel Autism Research & Training Center, cited for excellence in collaboration and service in autism.

Lisa Ackerman, founder of Talk About Curing Autism Now (TACA), received the award for establishing a grass-roots organization and service in autism.

Medical correspondent Dr. Bruce Hensel and his team at NBC4 were recognized for producing "Autism: The Hidden Epidemic." Hensel's team was credited with bringing awareness of autism to the community.

Danielle Paskowitz of Surfers Healing accepted the award on behalf of herself and her husband, Izzy, for bringing an alternative therapy approach to the service of autism.

The evening also threw the spotlight on a new feature film directed by Taylor Cross, a young man with autism, and co-directed by his mother, Keri Bowers, autism activist and founder of PAUSE for Kids. A brief excerpt of the film, " Normal People Scare Me," which explores the many facets of autism through interviews with autistic individuals, ran throughout the evening. Joey Travolta produced the film.

For more information, go to www.theautismperspective.org.

3	Vaccine News

3. Article A:

AUTISM CONTROVERSY EATS AT CREDIBILITY OF CDC

By ALISON YOUNG
The Atlanta Journal-Constitution
Published on: 04/06/06

The Centers for Disease Control and Prevention, rarely the subject of public controversy, is facing an emerging credibility crisis on the emotional issue of whether old-style vaccines containing a mercury preservative caused autism in thousands of children.

The agency is being accused of cover-ups and scientific manipulations by a vocal group of autism advocates and is facing questions from some high-profile members of Congress.

As the debate and controversy increasingly finds its way into pediatricians' offices, average parents of healthy children are questioning whether vaccines are safe, sometimes even refusing inoculations.
The CDC and other public health officials insist such questions lack a basis in fact or science. Their greatest concern is that the broadening debate holds the potential to put a new generation of children at certain risk of deadly diseases if confidence in the safety of vaccines is lost and they don't receive recommended shots.

"I think it's huge," said Dr. Julia McMillan, a member of the American Academy of Pediatrics committee that makes vaccine recommendations. "There's no pediatrician in practice that doesn't confront this on a weekly basis: families who are questioning the need for – and in some cases refusing — vaccines for their children."

But the academy and the CDC are in agreement: They say there is no evidence to support a connection between autism and the mercury-based preservative thimerosal, which they stress is no longer used in most pediatric vaccines.

"We simply don't know what the cause of autism is," Dr. Bob Davis, the CDC's director of immunization safety, said Wednesday. Nonetheless, the CDC finds itself at the center of criticism.

A full-page ad scheduled to run in today's editions of USA Today, the nation's largest-circulation newspaper, accuses the CDC of "causing an epidemic of autism" by recommending that children receive a series of vaccines that until 2001 contained thimerosal.

The ad, placed by a group of autism advocacy groups, quotes environmental lawyer Robert F. Kennedy Jr. as saying: "It's time for the CDC to come clean with the American public."

But what stings public health advocates more is a letter sent Feb. 22 by Sen. Joseph Lieberman (D-Conn.) and seven other members of Congress. The bipartisan group asks that the CDC not take the lead on a new study examining the vaccine-autism issue.

"If the federal government is going to have a study whose results will be broadly accepted, such a study cannot be led by the CDC," the group wrote Dr. David Schwartz, new director of the National Institute of Environmental Health Sciences. The institute, a part of the National Institutes of Health, will convene a panel in May to discuss how to analyze a key CDC database to determine whether autism rates have dropped since thimerosal was removed from vaccines.

The letter was also signed by Sen. Debbie Stabenow, (D-Mich.), Rep. Dave Weldon, (R-Fla.,) Rep. Chris Smith, (R-N.J.), Rep. Carolyn Maloney, (D-N.Y.), Rep. Dan Burton, (R-Ind.), Rep. Joseph Crowley, (D-N.Y,), and Rep. Maurice Hinchey, (D-N.Y.).

Agency officials said Wednesday they are proud of the CDC's work on thimerosal safety issues and that they have looked hard to find a link as well as to find any other cause of autism.

"It was an unfortunate choice of language," Davis said of the Lieberman letter. "They and everyone else are certainly entitled to their opinion. We stand by all the research we have done."

Public health officials who work with CDC are more blunt.

"I think it's shocking," said Dr. Martin Myers, executive director of the National Network for Immunization Information and a professor of pediatrics at the University of Texas medical branch in Galveston.

"The loss of public trust in one of the most extraordinary institutions in the world. I'm not quite sure how that has occurred, but it has, and that's one of the unfortunate consequences," Myers said.

The controversy, which erupted as some autism advocates rallied on Capitol Hill today in conjunction with National Autism Month, is gaining political traction, moving well beyond an initial core of autism activists, CDC, public health and congressional officials all agree.

There are many parents of autistic children who believe, as do most pediatricians and scientists, that there is no scientific evidence that thimerosal caused autism and other neurological disorders. That issue was settled for most in a widely publicized 2004 report by an expert panel convened by the National Academy of Sciences Institute of Medicine.

But the report has been the subject of controversy and intense scrutiny since it was published.

Parents of many autistic children insist that thimerosal caused the disorder, because it appeared around the time their children received vaccinations. Their advocates also point to what they say is intriguing new research in animal models indicating that some individuals may be more sensitive to thimerosal than others. Martin Cowen, whose family lives in Jonesboro, is one such parent.

Cowen is convinced thimerosal-containing vaccines caused his son Lindsey's autism. Lindsey, who turned 8 last week, does not speak, has not been toilet trained and cannot be allowed outdoors without being restrained for fear he'll run into traffic, his father said.

Cowen is highly skeptical of the CDC, a position shared by a cohort of parents and advocates across the country.

"An enormous effort is being made to deny the connection," he said of the CDC. "What do I think their motive is? They are very interested in having the herd vaccinated... They don't think of people as people suffering individually. It's the greatest good for the greatest number."

The National Immunization Program, run by the CDC, coordinates immunization activities across the country. Increasing the rate of immunization against disease is a cornerstone of public health.

At the same time, the CDC also is charged with monitoring vaccine safety. It's an inherent conflict of interest, said Weldon, a doctor before he was elected to Congress.

"They really do have a credibility problem," said Weldon, who serves on the committee that decides the CDC's budget. "Part of the credibility problem is it's asking them to investigate a problem that they may have created."

Weldon became involved in the thimerosal issue seven years ago. "Honestly, at first I was very dubious," he said. "As I looked at it more and more, I began to feel there is some validity to this."

Weldon said the recent interest by Lieberman and others on Capitol Hill is a sign the issue is gaining political traction. Lieberman was unavailable for comment.

The controversy and public debate is likely to be further fueled by the full-page ad being paid for by a coalition of the autism activist groups led by Generation Rescue. The ad promotes a sophisticated Web site, www.PutChildren First.org, which includes links to CDC documents, e-mails and transcripts the groups say support their contention of an agency cover-up.

CDC spokesman Glen Nowak said many of the documents on the site have been in the public domain for years, and are presented out of context and in ways that may "look quite ominous" – when they're not.

"It's a very challenging issue," he said. The CDC is bracing for a spike in calls today from parents with questions and is increasing staffing at its public help line, 1-800-232-4636.

Find this article at:
http://www.ajc.com/metro/content/metro/atlanta/stories/0406metautism. html

3. Article B:

CDC Statement regarding autism-related advertisement in USA Today

Statement
For Immediate Release
April 6, 2006

Contact:
Division of Media Relations
404-639-3286

We know that autism is a heart-wrenching situation for many families and many children and it presents special challenges that we would certainly want to prevent and do anything we could to avoid. When it comes to the nation’s immunization recommendations, the CDC and Public Health Service are always guided by one overriding goal and interest—all our recommendations are designed to protect the health and well being of all children.

We are very disappointed in an advertisement that appears in today’s edition of USA Today. The advertisement completely mischaracterizes the efforts of CDC, the American Academy of Pediatrics, the Institute of Medicine, and others to protect the health and well being of the nation’s children. CDC has sponsored multiple public meetings and scientific reviews, we’ve involved numerous outside organizations and experts in our research and recommendations, and we’ve made continued investments in research designed to discover factors which may place children at risk for developing autism. Importantly, if levels of thimerosal found in vaccines, including influenza vaccines, were associated with harm, CDC, the Public Health Service, and the nation’s physicians (e.g., the American Academy of Pediatrics, the American Medical Association, and American Academy of Family Physicians) would not recommend their use.

We’ve made substantial progress in removing thimerosal from vaccines – and have done so without placing infants and children at risk for potentially serious vaccine preventable diseases. As we continue in our efforts to further reduce the use of thimerosal in vaccines, we must also ensure, particularly in the case of influenza, that our efforts do not create serious undesirable outcomes, such as vaccine shortages that would place people, including children, at risk. History has shown that disruptions in vaccine supplies can render the population more vulnerable to diseases we know we can prevent.

We don't know, unfortunately, for children with autism what caused it, nor do we have sound, scientifically valid information on effective treatments. That's a fact. We just simply don't have answers to the cause of this disorder or the disorders that fall into the autism spectrum. We don't have a complete picture of the scope of the problem. We're just learning about the subtleties that can be early signs of autism, we're learning about the importance of early detection, and we're learning about the importance of early treatment, but we have a long way to go before we really understand the scope and magnitude of this problem in our country and what the trends really mean.

As we're looking for answers related to the causes and effective treatments for autism, we have to also be careful not to base our health recommendations on unproven hypotheses or fear. We have to base our decisions on the best available science that we have in front of us, and today the best available science indicates to us that vaccines save lives, and that's a very, very important message for all of us to remember.

For more information about autism, immunizations, or thimerosal, we encourage you to visit the CDC website: www.cdc.gov

3. Article C:

Dan Olmsted – New Entries

The Age of Autism: Pox -- Part 1

By Dan Olmsted for UPI
http://tinyurl.com/qhcet

      Children in families with problematic reactions to chickenpox virus may be at risk for developing autism if they get that live-virus immunization too close to other live-virus vaccines, a three-month United Press International investigation of cases in one northwest U.S. city suggests.
      Several such families in the Washington state capital of Olympia watched their children regress into full-syndrome autism -- losing language and social skills and adopting repetitive behaviors -- in the months following the shots. Two children had participated in small clinical trials in Olympia of investigational Merck & Co. chickenpox vaccines in combination with the live-virus mumps-measles-rubella vaccine -- the MMR.
      Federal health authorities consistently have rejected concerns about a link between immunizations and autism. But a family background of problems coping with viruses used in live-virus vaccines has not been considered a possible risk factor, experts said.
      One of the children in the clinical trials, Jimmy Flinton, now 4, got about 10 times the standard dose of chickenpox vaccine in a shot that also contained the standard MMR.
      Called ProQuad, that combined immunization was approved by the U.S. Food and Drug Administration last September -- the first time four "attenuated" or weakened live viruses have been mixed together in a single shot.
      The second child, Timothy Baltzley, now 6, got an investigational "process upgrade" chickenpox shot and a separate MMR shot at the same office visit.
      Both children have a parent who had unusual reactions to chickenpox virus.      Four days after the MMR and chickenpox injections he became ill with a fever and lay limp in his mother's arms for the first time in his life.
      Timothy's Baltzley's mother, Kimberly, had chickenpox three times, the last at age 16, just three years before he was born. Jimmy Flinton's father, Paul, had shingles as a teenager. Shingles is reactivated chickenpox virus that painfully inflames nerves and mostly affects older people or those with weakened immune systems.
      Both children got the vaccines at 12 months, the age at which chickenpox and MMR immunizations are first recommended by the Centers for Disease Control and Prevention. They were among a total of 101 subjects in the two trials in Olympia, according to the Western Institutional Review Board, which approved the trial protocols.
      Half-a-dozen other parents of preschool-age autistic children from the same neighborhood in Olympia recognized a common thread: unusual chickenpox histories in their families and simultaneous or closely timed chickenpox and MMR shots in their children.
      "It's the proximity of the chickenpox and MMR vaccinations" and the family histories that stand out, said Denise Rohrbeck, mother of 3-year-old Grant.
      Rohrbeck has not been able to develop immunity to chickenpox despite being twice vaccinated as an adult, the last time just two years before her son was born. A couple of months before he got the standard chickenpox and MMR shots at the same office visit at age 1, Grant had a stubborn and severe case of roseola, which like chickenpox is a herpesvirus.
      Four days after the MMR and chickenpox injections he became ill with a fever and lay limp in his mother's arms for the first time in his life.
      "He began having chronic diarrhea, and by his 15-month checkup he had regressed so drastically that his pediatrician suggested he could be autistic," Rohrback recalled. The doctor agreed to the parents' request for an immediate neurodevelopmental evaluation, which resulted in a diagnosis of full-syndrome autism.
      Rohbeck said she began looking for a possible connection between vaccines and autism among neighborhood children after the Thurston County Health Department did not follow up on parents' concerns raised at a meeting last October. With the parents' continued involvement, she has now compiled vaccination records of 14 Olympia children diagnosed with autism, as well as 16 who are not.
      The admittedly unscientific chickenpox-MMR association continues to be striking, and the two cases following the clinical trials seemed to underscore it, she said.
      A Merck spokeswoman said the company reported those two cases to the FDA this March -- the same month UPI asked Merck about them.
      "We just received these reports in March 2006, six months after ProQuad was approved in the U.S., and they were sent to the FDA after we received them," Merck's Christine Fanelle said in a statement. She said Merck received "the two reports of autism AEs from Olympia -- one from the parent of a child in the ProQuad trial and one from the parent of a child in (the 'process upgrade' chickenpox) study."
      Parents Jennifer Flinton and Kimberly Baltzley say they never called Merck and wouldn't know who to contact there; last summer, Jennifer Flinton reported Jimmy's autism to the federal government's Vaccine Adverse Events Reporting System, attributing it to the cumulative effects of vaccination. The federal health employee she spoke to on the phone said she would follow up by gathering lot numbers and other information on the vaccines.
      The parents said their pediatrician, who conducted both of the Merck-funded trials in Olympia, knew about their children's autism diagnoses within months of their participation in January 2001 and October 2002.
      The Olympia trials were part of wider Merck studies conducted at several sites in the United States and abroad. Fanelle said Merck would not disclose information about any other reports of autism.
      "We have confirmed your original inquiry on whether we received the two reports out of Olympia," she said. "We are not going to comment on reports beyond this.
      "There were more than 7,000 children in our ProQuad trials, 5,800 of whom received ProQuad vaccine," she added.
      Diana Sparby of the Western Institutional Review Board in Olympia said it had not received reports of autism from the local ProQuad study, but she noted the protocol "was not designed to assess long-term safety, as it called for follow-up for only 42 days following vaccine administration."
      The FDA, which approves drugs after determining they are safe and effective and monitors reports of side effects after they come on the market, did not respond to repeated inquiries from UPI about the Olympia cases or parents' concerns about family chickenpox histories.
      Other unusual histories in neighborhood families with autistic children 6 and under:
      -- Another child had roseola 12 weeks before getting his chickenpox and MMR shots;
      -- Another father had shingles as a teenager;
      -- Another mother had chickenpox as an adult two years before her pregnancy;       -- A mother had chronic cold sores, also a herpesvirus, as a child that were so severe they had to be treated medically;
      In addition, another mother had a case of measles as an adult.
      Merck, which manufactures the standard MMR shot and the standalone Varivax chickenpox shot as well as the experimental vaccines used in the clinical trials, said repeated studies show no relation between vaccines and autism.
      "We don't see an association," spokeswoman Fanelle said, citing as confirmation a 2004 report by the widely respected Institute of Medicine, part of the National Academies. That report rejected a link between autism and either the MMR vaccine or the mercury-based preservative thimerosal. The report also urged that research dollars be spent on "more promising" autism research.
      "There will always be some people who say vaccines cause autism despite the lack of scientific evidence," Fanelle said.
      In the United States, controversy over a possible link has centered on thimerosal. Beginning in the late 1980s children were exposed to increasing amounts of thimerosal, which is half ethyl mercury, as more vaccines were mandated.
      Thimerosal was phased out of routine childhood immunizations -- but not all flu shots given to children and pregnant women -- beginning in 1999. Although the Olympia children with autism were born after the phase-out was recommended, their vaccine records show more than half of them got at least one shot containing thimerosal during the first year of life. It is possible all of them did, but incomplete information from manufacturers makes that uncertain.
      Chickenpox and MMR immunizations don't contain thimerosal because the mercury would inactivate the viruses, but some proponents of a vaccine-autism link suspect thimerosal exposure from other immunizations could have a potentiating effect, damaging a child's defenses and paving the way for live viruses to wreck havoc.

      "I'll defend doctors to the end on this point. They are a convenient front line for those agencies to hide behind -- it's just shameful."
      All live-virus vaccines are attenuated -- significantly weakened based on the theory that this creates immunity without causing the actual disease or other adverse health consequences. Other vaccines on the U.S. childhood immunization schedule, including hepatitis B and the polio shot, contain killed or so-called inactivated viruses. Live polio virus was dropped in 2000 after health authorities determined it was actually causing polio in a small number of cases.
      Despite the Olympia parents' concern, none points an accusing finger at doctors.
      "I worry about pediatricians being vilified," said Rohrbeck. "We vaccinated our son because we shared their faith that vaccines were safe.
      "If it turns out that some vaccines are not safe for all children and that these hazards could have been found with more rigorous testing -- or worse, that the dangers were already known -- that's the fault of the CDC, the FDA and the manufacturers," she said.
      "I'll defend doctors to the end on this point. They are a convenient front line for those agencies to hide behind -- it's just shameful."
      The theory that live virus immunizations could trigger autism first arose in 1998 in Britain, when gastroenterologist Dr. Andrew Wakefield published a paper suggesting a possible association between childhood MMR immunization, bowel disease and regressive autism.
      "It's actually heartbreaking, listening to these parents, because you're staring into an abyss," Wakefield said.

      The premise: Interaction between viruses -- a well-known phenomenon scientifically known as immune interference -- could depress a susceptible child's immune system, lead to persistent infection by the measles virus in the GI tract and possibly the nervous system itself, and trigger autism-inducing brain damage. While the case has not been proven, it gains plausibility from the fact that naturally occurring measles infection is known to cause delayed brain damage in a small percentage of children, proponents of the theory say.
      Wakefield's study, and his plea in Britain to separate the component measles, mumps and rubella (German measles) vaccines and administer them a year apart to reduce possible risk, caused an uproar. Co-authors subsequently repudiated part of the paper, conflict-of-interest allegations emerged, and the prestigious Lancet, which originally published the study, issued a statement calling it "fatally flawed."
      Wakefield was asked to leave his medical job in Britain and is now doing research in Austin, Texas.
      After the Olympia cases were described to him by UPI in March, Wakefield met with several of those parents at an autism conference in Portland, Ore. He also read studies Merck cites as central to the FDA approval of ProQuad.
      "It's actually heartbreaking, listening to these parents, because you're staring into an abyss," Wakefield said afterwards. "You're listening to stories which reflect the fundamental misconception of vaccine manufacturers of what viruses are and what they do. The whole perception of these people is dangerously na?ve."
      In contrast to the United States, British health authorities have not recommended chickenpox immunization. But an MMR-chickenpox shot was under discussion there at one point, and Wakefield said he warned its developers that putting four live viruses in one shot was a bad idea.
      He says the Olympia cases show why.
      "As far as I'm concerned, you are further increasing the likelihood of persistent infection and delayed disease, which they are never looking for and therefore they will never find if it does occur, as it did clearly in a relatively short space of time with some of these children, and it's never ascribed to an adverse reaction to the vaccine."
      On its Web site, the CDC says such concerns -- and Wakefield's studies in particular -- are not based on good science.
      "Current scientific evidence does not support the hypothesis that MMR vaccine, or any combination of vaccines, causes the development of autism, including regressive forms of autism," the CDC says.
      "The existing studies that suggest a causal relationship between MMR vaccine and autism have generated media attention. However, these studies have significant weaknesses and are far outweighed by epidemiological studies ... that have consistently failed to show a causal relationship between MMR vaccine and autism."
      http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-mmr.htm

       Dr. Jeff Bradstreet, a family practitioner in Florida who treats 3,000 autistic children and has worked with Wakefield, said he believes the risk of autism rises the earlier and closertogether that live-virus vaccines are administered. He warned the Institute of Medicine in 2004 that it was ignoring the possibility that younger children are more vulnerable because their immune and neurological systems are immature.
      "There's definitely been an association of kids getting MMR at 12 months and crashing (becoming autistic)," Bradstreet said.
      He said adding 10 times the standard dose of chickenpox virus, called varicella-zoster, to the MMR shot and administering it to 1-year-olds is playing with fire.
      "We think putting varicella with MMR is just nuts."
      British researcher Paul Shattock sees another reason to be concerned with combining the four viruses: He suspects that children who get wild -- or naturally occurring -- chickenpox too close in time to the MMR shot face a higher risk for autism. That's scenario parallels the one Olympia parents noticed with the chickenpox vaccination.
      Shattock, director of the Autism Research Unit in the School of Sciences at the University of Sunderland, said he noticed that autistic British children whose parents blame the MMR for triggering the disorder had a pattern of "undisclosed viral illness" around the time of the shot.
      He studied the records of 100 of those children, compared to 100 children whose parents did not cite the MMR as the trigger, to see if there was a higher incidence of chickenpox cases three months before or after the MMR immunization.
      "Now, there was," Shattock said in an interview while attending an autism conference this month in Washington, D.C. "It wasn't statistically significant at the 95 percent level -- but enough to make you think that if it was a huge study, it might be."

      "There's no doubt the immune response to viruses is determined by our genetic constitution," Wakefield said. "It may well be there is a genetically determined predisposition to abnormal handling of chickenpox virus, at least in children.
      His concern about adding chickenpox to the MMR shot: "I'm worried about it because of the interference of the vaccines, mainly because it depresses the immune system by yet another mechanism."
      A Merck scientist discussed that issue at a CDC meeting in 2004, the year before ProQuad was approved, according to agency minutes. Dr. Florian Schodel "confirmed the possibility" that the chickenpox virus component of ProQuad was "causing a local immune suppression and an increase in measles virus replication. ...
      "The current hypothesis is that the varicella and measles virus are co-infecting the same or proximate areas of the body and engaging in a specific interaction, but how that works is as yet unknown."
      He said the interference appeared to involve only the chickenpox and measles viruses -- "there is no such effect for the mumps or rubella vaccines administered locally at the same time."
      At the same meeting, Merck's Dr. Barbara Keller said the amount of chickenpox virus in ProQuad is "about a log" -- or 10 times -- higher than Merck's standalone chickenpox vaccine, Varivax, in order to overcome immune interference.
      Both Wakefield and Shattock said the Olympia families' unusual histories with chickenpox are worrisome because their children might have inherited problems coping with the vaccine.
      "There's no doubt the immune response to viruses is determined by our genetic constitution," Wakefield said. "It may well be there is a genetically determined predisposition to abnormal handling of chickenpox virus, at least in children.
      "This kind of phenomenon has been shown to (play a role in) measles. The immune response to measles is determined by your genetic profile. It's certainly consistent with what is known about the immune response to viruses."
      ProQuad is likely to be widely adopted by healthcare professionals who previously administered separate MMR and Varivax shots.
      "Use of licensed combination vaccines, such as (ProQuad), is preferred to separate injection of their equivalent component vaccines," says the new edition of the CDC's authoritative "Pink Book" on vaccine-preventable diseases.
      "When used, (the immunization) should be administered on or after the first birthday, preferably as soon as the child becomes eligible for vaccination."
      This series of articles, based on reporting in Olympia in February and March, tells the families' stories, looks at the scientific controversy and examines implications for the autism-vaccine debate.
      --       Next: "He has gone backward mentally ..."
      --       E-mail: dolmsted@upi.com http://tinyurl.com/r47hb

The Age of Autism: Pox -- Part 2

By Dan Olmsted
UPI Senior Editor
Apr. 20, 2006

Washington, Apr. 20 (UPI) — Call it the silence of the feds.       This week, The Age of Autism began a series of articles entitled "Pox," laying out the compelling observations of a group of parents in Olympia, Wash., who are concerned live-virus vaccines are triggering autism.
      These parents spotted a possibly troublesome trio of factors in their children's cases: Chickenpox and measles-mumps-rubella (MMR) vaccinations clustered together at the earliest recommended ages; a family history of problematic reactions to naturally occurring chickenpox and other herpesviruses; and the onset of autism in their children, often following a brief but notable physical illness.
      Two of the children had been in clinical trials in Olympia of vaccines not yet approved by the U.S. Food and Drug Administration, vaccines with investigational chickenpox formulas. The FDA subsequently approved one of those drugs, called ProQuad, last September.
      What does the FDA say to these concerns, and in particular to a case of regressive full-syndrome autism after a clinical trial of a drug it just approved?
      Nothing.
      In Part 1, we reported: "The Food and Drug Administration, which approves drugs after determining they are safe and effective and monitors reports of side effects after they come on the market, did not respond to repeated inquiries from UPI about the Olympia cases or parents' concerns about family chickenpox histories."
      On Monday, March 20 -- a month ago -- I sent an e-mail to FDA spokesman Stephen King asking about the autistic Olympia children from the clinical trials. King had already told me that there were no minutes available for an FDA advisory committee hearing prior to ProQuad's approval, because no meeting had been held.       Such meetings sometimes are called if there are concerns about safety or other issues surrounding proposed or already-approved medicines.
      ProQuad combines the existing MMR and the standalone chickenpox vaccine, Varivax, but with a major difference: It contains about 10 times more chickenpox vaccine, apparently in order to overcome immune interference from the other weakened live viruses in the shot.
      My e-mail:

      "Hi Stephen,
      I left you a voice mail last week and wanted to follow up with this written query. ...
      Questions:
      -- Was the FDA aware of these or any other reports of autism following (clinical trials)? If not, would they have been of concern and are they of concern now?
      -- Why was it necessary to put significantly more varicella (chickenpox) virus in ProQuad than in the standalone Varivax shot? ...
      -- Has the FDA ever considered immune status of parents re live virus vaccines as a possible factor in the child's ability to handle them? The mother of one of the children had a severe case of chickenpox just three years before her child was born; the father of the other had shingles as a teenager, which is unusual.
      Thanks for considering these questions. I would appreciate hearing from you this week.
      Sincerely,
      Dan Olmsted
      United Press International"
      There was no response.
      I also learned that one of the Olympia parents, Jennifer Flinton, last summer called the federal government's Vaccine Adverse Events Reporting System, jointly monitored by the FDA and the Centers for Disease Control and Prevention, to report her son Jimmy's autism. She attributed his regression to cumulative exposure to vaccinations; the worker who took the report said she would follow up by collecting all the information about the vaccines he was given.
      Jimmy Flinton had been in the ProQuad clinical trial in 2002 and developed autism four months afterwards. He was one of 33 children in the Olympia arm of the trial.
      Merck & Co., which funded the trials and manufactures the vaccines involved including ProQuad, said it reported the two autism cases from Olympia to the FDA this March, which is when Age of Autism first asked about them. Merck said that is also when the parents made the reports, but the parents said they don't know what
Merck is talking about.
      Maybe federal health officials have just plain had it with these concerns, which they clearly consider preposterous. Study after study, they say, has shown no evidence that vaccines are linked to autism, and in 2004 the widely respected Institute of Medicine said the case was closed and it was time to look elsewhere for the cause or causes of autism. Dr. Marie McCormick, the distinguished Harvard professor who headed that review, famously derided as "really terrifying, the scientific illiteracy that supports these suspicions."
      A single case several months after a child receives an investigational chickenpox vaccine in a trial with 33 other children certainly wouldn't threaten that view.
      Nor would another case at the same pediatrician's office in the same city using the same live viruses in another small clinical trial, this one with 68 kids.
      Nor would problematic chickenpox histories in those families, nor would the same pattern among other families with autistic children in the same neighborhood. ...
      Still, at some point, wouldn't you expect someone somewhere in the nation's public health hierarchy to raise an eyebrow? Yet getting anyone's attention is just about impossible -- in Washington state no less than Washington, D.C.
      Dr. Diana Yu of the Thurston County Health Department in Olympia insisted to me over a period of several weeks that no clinical trials whatsoever had been conducted by any pediatricians there. This, despite my faxing her consent forms signed by the parents.
      One seven-page documents begins: "Research Subject Consent Form: Vaccine Study -- Children. Your child is invited to be in a research study ... The study is being done for Merck & Co. ... (B)oth investigational drugs ... have not been licensed by the U.S. Food and Drug Administration."
      Yu told me: "None of the practices were in any 'clinical trials' as part of any vaccine study. Some practices may have been 'trying things out' but have not made it a policy for their clinic yet. With all due respect, these doctors are not on trial and should not be painted with such a broad stroke."
      Nobody's indicting pediatricians. It's public health officials and drug companies they're wondering about.
      "I worry about pediatricians being vilified," said Denise Rohrbeck, one of the Olympia parents quoted in Pox -- Part 1. "We vaccinated our son because we shared their faith that vaccines were safe.
      "If it turns out that some vaccines are not safe for all children and that these hazards could have been found with more rigorous testing -- or worse, that the dangers were already known -- that's the fault of the CDC, the FDA and the manufacturers," she said.
      Meanwhile, another potentially significant issue in Olympia remains unanswered weeks after I raised it with the health department there. The first thing that caught the parents' attention was a seeming absence of autism cases at one of the two big medical practices in town, Pediatric Associates.
      The parents, who know each other through a countywide support group, haven't been able to find a single case of full-syndrome autism among preschoolers who were vaccinated from birth at PA, as the parents call it.
      Anecdotal, yes -- but intriguing: Autism cases are not hard to find at the other pediatric practices in town, no surprise given a rate of autistic disorders of 1 in 166 American children.
      So what's up at PA?
      Parents say they learned at least half the doctors there delay the chickenpox and MMR shots until 18 months, and the other half tend to break them up -- giving one at 12 or 15 months and the other about six months later. Records parents gathered suggest this trend at PA started sometime after 2000 -- records collected from 1999 show the two shots given together as early as 12 months.       Interestingly, parents found full-syndrome kids from PA born before 2000.
      The CDC recommends that the MMR and chickenpox shots be given as soon as possible beginning at 12 months and no later than 15 months for the MMR and 18 months for chickenpox. That's when the autistic kids the parents in Olympia are talking about got them -- sooner rather than later and usually at the same time, not widely spaced or starting at 18 months as appears to be the case at Pediatric Associates.
      Thus the PA kids and their shot patterns might be an informal "control group" right in the middle of this state capital of just over 50,000 on the South Puget Sound.
      Pediatric Associates did not respond to questions about its immunization policies. Neither did the county health department, although Yu acknowledged it would be "simple" for the department to check its records and determine whether there really is a difference in immunization schedules.
      As this series on the Olympia kids unfolds over the next several weeks, the parents are hopeful that more information -- maybe even some sort of response from the nation's drug regulators --will be forthcoming.
      Stay tuned. Don't hold breath.
      --
      Next: Ryan reacts at the doctor's office.

http://news.monstersandcritics.com/lifestyle/consumerhealth/article_1159532.
php/The_Age_of_Autism_Pox_--_Part_3

The Age of Autism: Pox -- Part 3

WASHINGTON, DC, United States (UPI) -- When 12-month-old Jimmy Flinton joined a clinical trial of a new immunization for chickenpox, measles, mumps and rubella, no one told his family it contained about 10 times the usual dose of live-virus chickenpox vaccine.

And no one considered whether his family`s unusual chickenpox history -- including adolescent shingles and herpesvirus in the eyes -- might raise the risk of adverse reactions to the vaccine.

Now that Jimmy has been diagnosed with regressive autism, they wish someone had done so.

In 2002 Jimmy`s mom, Jennifer Flinton, signed a seven-page 'Research Subject Consent Form -- Vaccine Study (Children)' at the office of her pediatrician in Olympia, Wash.

'Your child is invited to be in a research study,' reads the form, which lists Merck & Co. of Whitehouse Station, N.J., as the sponsor. 'You need to decide whether or not you want your child to be in this study. Please take your time to make your decision.'

The purpose was 'to test the safety of the study vaccine, ProQuad refrigerated and to show that this vaccine provides a similar level of protection as compared to another study vaccine, ProQuad frozen.' Both versions contained attenuated -- substantially weakened -- live viruses designed to trick the body into developing immunity to real-live measles, mumps, rubella (German measles) and chickenpox.

Previously, those first three vaccines were combined into one shot called the MMR, made by Merck; the chickenpox vaccine came in a separate shot called Varivax, also by Merck.

ProQuad was Merck`s investigational vaccine designed to put all four in one shot.

Tests already had determined ProQuad required more chickenpox virus than Varivax to produce the same level of immunity. A phenomenon called immune interference, in which viruses interact and interfere with each other in the human body, rendered the dose from the standalone vaccine insufficient.

The consent form Jennifer Flinton signed did not say anything about more chickenpox virus. It simply said ProQuad was 'a combination of two licensed vaccines,' the MMR and Varivax.

Merck wouldn`t confirm exactly how much more chickenpox virus is in ProQuad, characterizing it only as 'higher.' But in 2004, a Merck scientist said the amount in ProQuad was 'about a log' -- 10 times -- higher, according to minutes of a meeting at the Centers for Disease Control and Prevention.

As already reported in this series, Jimmy Flinton`s family is one of several in the same Olympia neighborhood who spotted a common thread: They had unusual histories of chickenpox and other herpesviruses in their families; their child got the chickenpox and MMR shots in close temporal
proximity, often at the same 12-month office visit when both are first recommended; and the child subsequently was diagnosed with regressive autism.

Jimmy is one of two children who were in small trials at age 12 months of chickenpox and MMR vaccines. Jimmy`s group had 33 participants, according to the Western Institutional Review Board in Olympia, which approved the protocol.

The second child was among 68 trialing Merck 'process upgrade' chickenpox shots given with the standard MMR.

The local trials were part of Merck studies of the vaccines in the United States and abroad. Spokeswoman Christine Fanelle would not address whether any other cases of autism had been reported in the broader trials, but she emphasized that neither Merck not independent experts have found a relation between vaccines and autism.

'We don`t see an association,' she said, citing as confirmation a 2004 report by the widely respected Institute of Medicine, part of the National Academies. That report rejected a link between autism and either the MMR vaccine or the mercury-based vaccine preservative thimerosal, and it urged
that research dollars be spent on 'more promising' autism research.

'There will always be some people who say vaccines cause autism despite the lack of scientific evidence,' Fanelle said.

Based on their admittedly anecdotal observations, however, the Olympia parents are concerned that inherited problems handling vaccine viruses may be an overlooked risk factor for autism in some children.

Jimmy Flinton`s paternal grandmother, Mary Southon, had a routine case of chickenpox in kindergarten. Fifteen years later, in 1970, she developed shingles on her right leg -- painful, blister-like pustules at nerve endings caused by reactivated chickenpox virus.

That is decidedly not routine. Shingles usually occur in older people or those with immune suppression, such as cancer patients undergoing chemotherapy.

'I was a healthy 20-year-old woman,' Southon said, recalling her surprise at the outbreak. The infection lasted several weeks and left her with permanent mild circulatory weakness in her leg and edema just above the ankle.

'I remember how painful it was and how it seemed to go on for the longest time,' said Southon, who lives in Olympia. She was going through a divorce at the time and suspects stress might have triggered the outbreak. She also suffered from lifelong recurrent cold sores, another herpesvirus.

Twenty years later, in 1990, Southon made a painful mistake that reminded her of that vulnerability.

'What happened was, I stuck a hard contact (lens) in my mouth, not knowing I was getting a cold sore. I put it into my eye and did it with the other contact, too.

'I developed cold sores on both corneas. That was very painful and went on for several weeks before the doctors finally figured out what it was,' she said. The doctor put her on medication for shingles and the problem cleared up, though not before doing damage she says will one day require cornea
transplants.

Coincidentally or not, Southon said she has not had any cold sores since she took the shingles medicine.

Her son, Paul Flinton, also had chickenpox as a child. At age 15, Paul got shingles, too -- also remarkable, doubly so given his mother`s similar history. The shingles spread along his neck, primarily on the right side, up to his jaw line; he even had a spot on his forehead.

'The doctor did diagnose it as shingles and was just amazed someone that young had developed it,' Southon recalled. It was also a stressful period in Paul life`s, she said, but the ongoing family pattern suggests unusual, inherited susceptibility to the virus.

'It just seems there is a genetic weakness towards it, a tendency to pick up the herpesvirus and run with it,' Mary Southon said. Given that, they might not have enrolled Paul son`s Jimmy in the ProQuad trial if they knew it had 10 times the standard dose of chickenpox virus.

She questioned why Merck would allow a child with Jimmy`s family background to test any chickenpox vaccine.

'It`s heartbreaking to think this could have been prevented if they (Merck) had done a little more research or had been a little more imaginative in (considering) what could have happened,' she said.

'I just think the rush to develop the vaccine is criminal. Why would they want to give babies 10 times the amount of the virus? Where is the thinking on that?'

Several vaccine researchers who remain concerned abut a possible autism link told this column they find the Olympia cluster, and Jimmy`s case in particular, deeply disturbing. The children`s histories fit one of the major vaccine-autism hypotheses like a surgical glove: the idea that interference among live viruses in vaccines could warp the body`s natural immune response, leading to persistent infection and delayed neurological problems.

After Age of Autism outlined the cases to him last month, British gastroenterologist Dr. Andrew Wakefield -- the chief proponent of that controversial theory -- met with several of the Olympia parents. He called their stories heartbreaking and likened the experience to 'staring into an
abyss' of unintended vaccination consequences that he fears are not confined to Olympia.

'The key to many of the problems you see with viral vaccines is interference,' he said afterward.

'The host control of a viral infection is fundamentally mediated through an adequate immune response, and that immune response has been conditioned by tens of thousands of years of evolution,' said Wakefield. 'And the outcome of an infection is dependent on the pattern of exposure.

'So measles is innocuous when encountered under normal circumstances of dose and age of exposure. But when it`s encountered under atypical circumstances early in life, particularly at high dose, then the outcome is very different. And the problem for these viruses is persistence and
delayed disease,' he said.

'So if they can establish persistent infection, elude the host immune response, then they can all come back and cause delayed disease later in life.'

'And herpesviruses do exactly the same thing,' he added.

'What alarms me about the cavalier approach of the industry and everybody else, the regulators, to these viruses is they presume the wild infection to be nasty and the vaccines to be innocuous -- that they can manipulate something that is biologically highly intelligent and exploit it to their
advantage.

'And they can`t. The viruses don`t behave like that and they never will. They merely come back to haunt you as something different.'

Wakefield, who left Britain in the wake of the controversy generated by his theories and now is conducting research in the United States, said it is well-established that problems coping with viruses can be inherited. His theories are based on research into the MMR vaccine; Britain does not give
routine chickenpox immunizations.

The Institute of Medicine`s 2004 report dismissed Wakefield`s concerns as speculation untethered to any scientific foundation. It said 'the body of epidemiological evidence favors rejection of a causal relationship between the MMR vaccine and autism. ... The committee further finds that potential
biological mechanisms for vaccine-induced autism that have been generated to date are theoretical only.'

'The overwhelming evidence from several well-designed studies indicates that childhood vaccines are not associated with autism,' said Dr. Marie McCormick of the Harvard School of Public Health, who chaired the IOM`s immunization review committee.

'We strongly support ongoing research to discover the cause or causes of this devastating disorder. Resources would be used most effectively if they were directed toward those avenues of inquiry that offer the greatest promise for answers. Without supporting evidence, the vaccine hypothesis
does not hold such promise.'

The CDC, whose Advisory Committee on Immunization Practices recommends the childhood vaccination schedule that states adopt, funded the Institute of Medicine study along with the National Institutes of Health.

'Groups of experts, including the American Academy of Pediatrics, agree that MMR vaccine is not responsible for recent increases in the number of children with autism,' the CDC noted.

'The existing studies that suggest a causal relationship between MMR vaccine and autism have generated media attention,' the CDC said. 'However, these studies have significant weaknesses and are far outweighed by the epidemiologic studies that have consistently failed to show a causal
relationship between MMR vaccine and autism.'

On Oct. 30, 2002, James George Flinton had his blood drawn as a baseline for the clinical trial in Olympia. At the same office visit, he got the ProQuad shot -- the refrigerated version, as it turned out.

For his participation, Jimmy`s family got a $50 gift certificate, with another to come at the end of a 42-day safety follow-up period when his blood would be drawn again to see if ProQuad worked.

Last September, the Food and Drug Administration approved frozen ProQuad for children 12 months to 12 years old. Merck said it is still working on the refrigerated version.

3. Article D:

Parents question role of mercury in rising number of Autism cases

Article published Apr 30, 2006
A matter of understanding

By Katie Wedell For The Palladium-Item

Jacob Nugent is a 5-year-old who loves to be hugged. He doesn't talk and didn't used to eat. He would gag on any food given to him.

His brother Nathanial, 7, loves to talk, but for a long time was thought to have severe behavioral problems.

Makayla Richardson, 9, won't talk, sit still for long or keep her shoes and socks on. She loves water and playing with anything with an unusual texture.

These children are different but have one critical thing in common, something they share with thousands of children nationwide.

They all have a disorder on the autism spectrum.

Autism is one of five neurological disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD).

According to the Centers for Disease Control and Prevention Web site, one in every 166 children has a PDD, also known as autism spectrum disorders. The number of people nationwide with a PDD is expected to reach 4 million in the next decade, according to estimates by the Autism Society of America.

"It is an epidemic," said Jacob and Nathanial's mother, Liberty resident Pam Nugent. "They have no idea what causes it."

Concerns about mercury

There is no known cause or cure for autism spectrum disorders but there are many theories. Fortunately, there are also many treatment options.

"A lot of parents are convinced that it's caused by mercury poisoning," Nugent said. "Right now it has a lot of parents afraid to give their children vaccinations."

On April 6, almost 1,000 Parents Against Mercury marched in Washington, D.C., to protest the use of mercury in vaccinations given to children.

Mercury is commonly used as a preservative in vaccines and a small amount can be found in almost every vaccine given to small children.

While the Centers for Disease Control and Prevention says there is no proven link between the small amounts of mercury found in vaccinations and autism, many parents are adamant that the rise in autism cases is directly related to the increase in the number of children vaccinated each year.

"It was her shots. We really believe that," said Liberty resident Pat Shriner, Makayla's grandmother. "She was saying mommy and daddy when she was supposed to."

Now Makayla won't talk at all.

"My biggest worry is her not talking," Shriner said. "She can't tell you (what's wrong)."

Treating autism

There are many types of therapy to help treat children with autism and make their lives as normal as possible.

The three basic treatment approaches are: behavioral and communication, biomedical and dietary, and complimentary such as music therapy. Because every case of autism is different, each child requires an individualized treatment program.

"There are no two single children with autism that are identical," Nugent said.

Jerri Orosz, service coordinator for First Steps, an organization that offers services for children with developmental delays, said behavioral and communication approaches include working with speech, occupational, and developmental therapists.

"Typically with autism spectrum disorders children will have sensory issues," she said. She described it as hypersensitivities to certain textures, foods or sounds. "It can be overwhelming."

She said therapists can work with these children in the home, in school, or even on the playground to help their sensory integration, fine motor skills and self-help skills.

"It's basically through enjoyable play with the kids," she said.

Therapists will use toys that involve sensations the child isn't used to, such as Playdough. They will have them use useful objects such as spoons and forks, and help then learn to dress by playing with zippers and Velcro.

It is these sensory issues that caused Jacob to gag on food and Makayla to take off her socks. Even two children who have sensory problems can need very different types of therapy.

Challenges at school

It's these individualized symptoms that cause problems when children with autism are put into public schools.

Congress passed the Individuals with Disabilities Education Act (IDEA), which guarantees that every child enrolled in a public school must receive an education at no cost to the parents that is appropriate for the child's age and developmental level, even if they have a disability.

Accurate statistics on the number of students with autism spectrum disorders in area schools are hard to come by but, according to IDEA online data, there were 5,434 cases between the ages of 3 and 22 in Indiana in 2003.

The U.S. Department of Education estimates the average cost of educating an autistic child to be more than $19,000 because they require so much individual attention. The Indiana Department of education estimates there are 6,000 students in Indiana public schools with an autism spectrum diagnosis.

There are 38 students with some form of PDD in the Richmond Community Schools where the average expenditure per pupil is $11,980.

"Due to the rise and the prevalence, the parents and the schools have to work together," Nugent said.

Both families said they have been pleased with the special education programs in the Union County schools.

Makayla's teacher, mother and aides write in a notebook every day so everyone is kept up to date on the day's incidents and successes.

Building understanding

Nugent and Shriner stressed that building awareness should be the most important issue because cases of autism are on the rise.

"We don't want pity, we want understanding," Nugent said. She said when Jacob was diagnosed she had no idea what autism was and believes many people suffer from that same lack of awareness.

"When my son was diagnosed we had no idea.My only perception of autism was 'Rain Man,' " she said, in reference to the 1988 movie starring Dustin Hoffman and Tom Cruise.

She said when most people think of neurological disorders they expect something to be physically wrong with the person and be visible on the outside.

"We're talking about beautiful kids with no physical deformities," she said. "These kids are not contagious."

Shriner said most of them are just misunderstood.

"Awareness helps so much because nobody knows who's going to have the next child like that," Shriner said.

Despite help from therapists, teachers and aides from organizations such as First Steps, most of the burden of having a child with a PDD falls on the parents.

"You can't go out to eat," Nugent said. "Nobody wants to baby-sit your kids ... We end up with children who are basically attached to our hips."

Shriner said going out in public is a major event because Makayla hates crowds and doesn't like to sit still for long.

"It's hard on families," she said. "These kids have to be on a schedule."

Support group deficit

Nugent said there are not many support groups or autism specialists in the area, which is why she runs her own support group for parents with disabled children.

"For parents with disabled children, there's nothing around here," she said. "We're talking about parents with limited resources." She said local families often have to go as far as Indianapolis to see specialists.

Makayla's mother Carla works third shift at her job so she must hire aides to watch her daughter at night. Once a week Makayla is shuttled from Liberty to Richmond for therapy. At one point, she spent nine months far from her family at Silvercrest Children's Development Center in New Albany, Ind. Shriner said the three-hour drive prevented the family from making it up to visit her every weekend, which wasn't fair to Makayla.

"That's nine months out of her life you can't get back," she said.

But Shriner hopes that as awareness increases and programs in the public schools are improved that children such as Makayla, Jacob and Nathanial won't have to be marginalized to places like Silvercrest, which the state recently announced it would close.

"They're smart kids," she said. "They're just very very misunderstood."

3. Article E:

Asking questions about vaccinations

Not all parents opt for the five vaccinations recommended for young kids. Some choose, others stagger the shots.

http://www.ocregister.com/ocregister/healthscience/atoz/article_1110538.phpIr

Sunday, April 23, 2006

By LISA LIDDANE The Orange County Register

CHECKUP: Dr. Bob Sears examines 1-month-old Olivia Byers in his
Capistrano Beach office.

The Orange County Health Care Agency observes National Infant Immunization Week, April 22-29, with "Community Immunity," a program that stresses the importance of protecting public health by ensuring that kids get all their recommended shots. Free immunizations are available weekdays for children and teens up to 18. Call (800) 564-8448 for schedules and locations. Activities such as story and music time and a magic show will be held 10-11 a.m. Wednesday at the agency's Santa Ana immunization clinic at 1725 W. 17th St. Call (714) 834-8680 for event information.

It's a question Dr. Bob Sears increasingly hears from new parents, a question for which the San Clemente pediatrician wishes he had a simple answer.
"Does my child need all those vaccines?"

Infants and toddlers have been getting as many as four shots in one visit. And with the addition this year of RotaTeq – a new rotavirus vaccine – to the kids' immunization schedule, the maximum shot load has risen to five.

But to accommodate parental concern about the safety of vaccines, Sears' young patients typically receive no more than two shots per visit.

Sears' flexible approach is unorthodox and uncommon, but it's one of several ways a handful of doctors and a growing number of parents are dealing with vaccine worries.

"Reports of staggered vaccinations are true," said Dr. Jasjit Singh, associate director of pediatric infectious disease at Children's Hospital of Orange County.

Some parents are choosing not to vaccinate at all, Singh said. Others are picking and choosing vaccines that their children are going to get.

Singh said that although she has no specific statistics, she has noticed that more educated, middle-to-high income families are opting to forgo vaccinations. Parents worry that some vaccines can increase risk of asthma, autism and learning disabilities.

This month, the vaccine debate intensified. An outbreak of mumps in nine states over the past eight weeks has tripled the number of mumps cases usually reported in the United States over a full year. Mumps is one of several diseases close to being eliminated in the United States.

Though no deaths have been attributed to mumps, the disease can cause deafness in children and sterility in men later in life.

But the vaccine for mumps, measles and rubella, MMR, is the one parents are most likely to worry about.

The MMR vaccine is at the core of the immunization debate because some researchers and parents believe thimerosal used as a preservative in the vaccine can cause autism. Thimerosal, a compound containing mercury, has been removed from children's vaccines, except for trace amounts, according to the federal Centers for
Disease Control and Prevention.

A review of studies does not show a link between vaccines with thimerosal and autism, according to the Immunization Safety Review Committee of the Institute of Medicine of the National Academies. But some parents and doctors are not convinced that enough research has been done.

A study in the Journal of American Physicians and Surgeons in March showed that autism and other neurological disorders decreased after mercury was removed from children's vaccines.

The controversy is heating up all the way from pediatricians' clinics to the halls of Congress and the CDC offices. On April 6, autism activist groups accused the CDC in a full-page ad in a national newspaper of covering up knowledge that mercury in vaccines caused the rise of autism. The CDC, which issues the immunization schedule, denied the accusation. A panel from the National Institute of Environmental Health Sciences will meet in May to address a study about whether the incidence of autism decreased after thimerosal was removed from or substantially reduced in most vaccines.

The results of that study won't make a difference to Melissa Cox, who began scouring the Internet and reading about vaccines before she became pregnant with Easton Cox, now 14 months. "After I told my husband what I found out about vaccines, he said, 'There is no way we're vaccinating.'"

That was the easy part. Finding a pediatrician who would agree to their wishes wasn't. But she eventually found one.

" Easton's pediatrician said, 'I disagree with your beliefs, but I'll see your son," said Cox, 26, of Huntington Beach. "At Easton's two-month visit, the doctor offered the shots. I declined. At the four-month visit, she stopped asking."

Cox said her son's excellent health is a testament to his vaccine-free existence. She said she believes that allowing her son's immune system to fight infection without the help of vaccines makes his body tougher. He's had only minor coughs and one bout of an ear infection, Cox said.

Kelly Grijalva's son, Andrew, stopped receiving vaccines after his two-month visit. "When we told his pediatrician that we didn't want him vaccinated, she walked away and said, 'That's not being a good parent,'" recalled Grijalva, 23, of Costa Mesa.

"Why would I want these chemicals in my baby's body?" she said. "If he catches a disease and dies from it, then that's God's will. I'd prefer that to him dying from a vaccine I purposely allowed him to have."

Cox and Grijalva are acutely aware that many parents don't agree with their beliefs, but they also add that many of the diseases for which kids are routinely vaccinated are no longer serious threats in the U.S.

"While many diseases indeed have been mostly eliminated in the U.S., they're certainly not eradicated in other parts of the world," said Daniel Salmon, associate director for policy and behavioral research at Institute for Vaccine Safety at Johns Hopkins University in Baltimore, Md. Salmon, also associate professor of epidemiology at the University of Florida in Gainesville, Fla., cites polio as an example of a disease that does not exist in the U.S. but is still a threat in developing countries, and potentially to the U.S.

In an era of frequent global travel, it's possible for such diseases to resurface in the U.S. and cause unvaccinated children to become seriously ill or die, he said.

Parents need to remember that vaccines have been largely responsible for preventing many deaths and health problems from numerous childhood diseases, CHOC's Singh said.

Vaccines are more than a family health issue – they are a public-health matter, she added. "If you don't have your children vaccinated, you're counting on the herd immunity of the population and putting not only your children but others around them at risk for preventable diseases," Singh said. "Vaccines are excellent, but they're not 100 percent protective."

Parents also need to better scrutinize their sources of vaccine information, she said. Parents may be getting biased and inaccurate information, she said.

Vaccines are relevant, but the busy nature of managed-care practice makes it difficult for doctors who see children to spend a lot of time discussing the risks and benefits of each vaccine, Salmon said.

Giving parents some flexibility with the immunization schedule is a much preferable option to children not getting vaccinated at all, said Sears, who is finishing "The Vaccine Book."

The vaccination schedule has some room for spreading out the vaccines, especially when a child reaches 6 months old.

"You decrease the exposure to a variety of chemicals if you spread out the vaccines," he said. "The only downside for parents is the extra driving and extra co-pays."

3. Article F:

Autism parents allege CDC cover-up

By Jeffrey Young

Officials at the Centers for Disease Control and Prevention (CDC) conspired to cover up information linking vaccines to developmental disorders in children, organizations representing parents of autistic children allege.

The advocacy groups have long contended that mercury and a mercury-based substance called thimerosal, which were commonly used as preservatives in vaccines, cause some children to develop autism or similar disorders.

The autism groups sponsored a full-page ad in today’s USA Today that reads, “If you caused a 6,000% increase in autism, wouldn’t you try to cover it up, too?” The ad alleges that the CDC “knows that the ambitious immunization schedule begun in the 1990s, nearly tripling the amount of mercury injected into our children, created an epidemic of autism in America.”

The organizations are holding a rally and press conference this morning to highlight their charges. Reps. Dan Burton (R-Ind), Dave Weldon (R-Fla.) and Carolyn Maloney (D-N.Y.) are scheduled to speak at the event in the park next to the Russell Senate Office Building.

The CDC, other federal authorities and even the American Academy of Pediatrics contest this theory and say there is no scientific evidence that vaccinations contribute to autism. Federal authorities also argue that the benefits of immunization against diseases such as mumps outweigh the risk of vaccines.

Autism groups say that one out of every 166 children has an autistic disorder. The CDC’s website says, “While it is clear that more children than ever before are being classified as” autistic, the agency does not know why, nor does it know exactly how many children have autistic disorders.

Based on internal e-mails written by officials at the CDC, the Food and Drug Administration (FDA) and others, the parents groups contend that federal authorities knew the vaccines were causing autism but failed to act.

Generation Rescue, one of the parents groups, has posted the documents on the website www.putchildrenfirst.org. Generation Rescue obtained the documents via the Freedom of Information Act.

“These are our federal health agencies that we trust … and they’re poisoning us,” said Wendy Fournier of the National Autism Association. “They’ve poisoned an entire generation of children,” she said. The CDC spearheaded an aggressive push to expand childhood vaccinations in the early 1990s.

Burton seconded the accusations in a statement yesterday. He has been relentless in his criticisms of the health agencies.

“I truly feel that the HHS [Department of Health and Human Services], CDC, [the Institute of Medicine] and the FDA have deliberately misled the American public on the dangers of mercury in vaccines, and I wholeheartedly support a thorough and independent investigation into the evident link between mercury and autism,” Burton said.

The CDC denied any cover-up and defended its policies. “We’ve taken this issue and the concerns very seriously from the beginning,” said CDC spokesman Glen Nowak.

The allegations of a conspiracy represent an intensification of a years-long campaign by these organizations.

The groups want Congress to investigate and will demand that criminal charges be brought against officials involved. The Senate Health, Education, Labor and Pensions Committee is investigating the agencies, a spokesman for the panel said. Last July, parents groups recommended to the committee that HHS, CDC and FDA officials should be charged with criminal negligence and criminal obstruction of justice.

In addition to the National Autism Association and Generation Rescue, A-Champ, NoMercury, Moms Against Mercury and AutismOne organized the rally and press conference. Today’s press conference will be followed by a conference on autism issues that will run through Monday.

Maloney said the agencies should respond better to the concerns of these parents and Congress but stopped short of endorsing the allegations of a cover-up.

“When it comes to mercury, autism and the government’s response, there are still more questions than answers. … I know that there are some in Congress who want to work to get those answers,” she said.

“While I cannot answer the question of an alleged cover-up, it is obvious to even the casual observer that the CDC has failed miserably investigating this matter,” Weldon said.

The organizations representing parents of autistic children have been vocal and aggressive in their campaigns to get mercury and thimerosal removed from all vaccines and to get the CDC and other agencies to change their policies related to childhood vaccines.

Their strategies have attracted the interest of many members of Congress over the years, notably Burton and Weldon. The conference report that accompanied the appropriations bill that funds HHS this year includes a provision requesting another study on the issue by the National Institutes of Health.

A scientific review issued by the National Academies’ Institute of Medicine in 2004 was intended to put the question of mercury and autism to rest but served only to fuel the fire.

The institute’s panel concurred with the CDC position. “Neither the mercury-based vaccine preservative thimerosal nor the measles-mumps-rubella (MMR) vaccine are associated with autism,” according to the press release that accompanied the report.

The parents groups alleged that the CDC pressured the committee that carried out the review to support its policies.

The chairwoman of the panel rejected that charge, which she characterized as an explicit attack on her integrity. Asked if CDC officials attempted to sway the committee’s deliberations, Harvard School of Public Health professor Marie McCormick said, “Absolutely not.”

UPCOMING TACA ACTIVITIES!

April 1 Kickoff

TACA’s 2nd Annual Friends and Family Campaign kicks off on April 1

Last year TACA families raised $35,000! TACA has grown to serve over 2,000 families and provides 95% of our services at no cost— WE NEED YOUR HELP!

Fundraising Kicks Off in April
Since TACA was started, dozens of TACA families have asked me “How can I help?” Last year we launched the friends and family campaign. We asked you to help by reaching out to your extended community to raise awareness about autism and funds to help TACA continue to fulfill its mission of educating and supporting families and building community. You came when we called and raised an amazing $35,000!!

This year we’re asking you to do it again. And to stretch yourself a little farther outside your comfort zone, into your more extended circle of family and friends. If you do that, together, I know we can raise $50,000 this year!

Request Your Picture of Hope Fundraising Kit
Picture of Hope Fundraising kits include: Complete instructions and suggestions on approaching family, friends, co-workers, neighbors and the company where you work, five magnets, and five sets of TACA brochures and information. You only need to supply the picture of your child!

For more information please contact us to order your kit or pick up your kit at a monthly TACA meeting.

TACA Friends & Family Efforts - SUPER STARS!
Nigro family	$ 10,000.00
Busse Family	$ 1,240.00
Yencso family	$ 1,000.00
Chin family	$ 936.00
Monahan & Skosh Monahans	$ 700.00
Lions Club Costa Mesa	$ 300.00
Brodie family	$ 275.00
Romero family	$ 175.00
Barboza family	$ 100.00
Smith family	$ 50.00
TOTAL IN:	$ 14,776.00
GOAL TO GO:	$ 35,224.00
Help TACA get there by June 30, 2006!

Sept. 17, 2006:

3rd Annual Picnic is NOW scheduled for September 17, 2006

At Camp James/Hidden Valley in Irvine, CA
Registration will be open June 1, 2006 off SHOP TACA!
Exhibit & Sponsorship opportunities available!

Oct.-Nov. 2006:

Join TACA & Cure Autism Now for these two walks

50% of the proceeds (if you select TACA in your referral box at sign up
or the links below) will go to TACA & 50% will go to CAN!

Orange County Walk:
Camp James/Hidden Valley – October 14, 2006
Click Here: http://www.walknow.org/faf/home/default.asp?
ievent=144278&msource=06TACAOC

San Diego walk :
(to be scheduled September 2006)
Click Here: http://www.walknow.org/faf/home/default.asp?
ievent=144271&msource=06TACASD

Exhibit & Sponsorship opportunities available!

Monthly Fun:

Just for FUN – once a month

Come Join your TACA friends at PUMP IT UP in Huntington Beach for some good ol’ family fun!
Click here for the schedule

TACA Surveys due!

In order to provide the seven TACA meeting locations with topics our members want to hear more about, we do annual surveys of interest.

We would like to hear from you. If you would like to participate in this survey you can in two ways:

At TACA meeting locations, you can pick up a survey form
Contact us for your own survey form to fill out and mail back to TACA.

Thanks for helping us provide relevant and important meeting topics for our members!

Vendor Announcements

HELP Autism Research Institute with a CHELATION PARENT SURVEY:

Dear Parent,

According to our records at the Autism Research Institute, you had rated your son’s/daughter’s response to chelation therapy on one of our websites or on our hardcopy survey form.

Although chelation is one of the most effective and safest treatments for autistic children, there is a great deal of controversy regarding the most effective chelating agents and the most efficient ways of administering them. We recently uploaded a chelation survey to the Internet. We would appreciate your completing our survey. Our findings will be shared with other parents and physicians. The survey is located at: www.ChelationSurvey.com

If you are also a subscriber to our Internet email list, you may have received a similar email yesterday. We apologize for the redundancy.

Regards,
Bernard Rimland, Ph.D.
Director
Autism Research Institute

Children diagnosed with Autism Spectrum Disorder needed for UCSD study

The Cognitive Neuroscience Lab, UCSD
Dr. Jaime Pineda, Ph.D., Director

The Cognitive Neuroscience Lab at UCSD is looking for participants for a study that will investigate neurofeedback, a therapy used to treat autism.

SUBJECT SPECIFICATIONS

Age: 7-17
Diagnosis: Autism Spectrum Disorder; IQ above 80

ABOUT NEUROFEEDBACK

Neurofeedback is a treatment in which a person learns to control his or her brain's electrical activity. Small electrodes, which only pick up the brain's activity and do not transmit electricity, are placed on the person's head. The electrodes are connected to a computer which displays feedback in the form of a video game. The person learns to control the video game using his or her brainwaves, thereby learning to modulate the brain's activity. Most people find neurofeedback training fun and entertaining, which gives this therapy an advantage for children who may have trouble getting motivated in other therapies. Neurofeedback has shown a promise in the clinical field and is just beginning to be researched scientifically. In addition, the knowledge gained from this research will benefit the autistic community as a whole.

TIME COMMITMENT

Three 45-minute appointments per week, Monday through Friday, between the hours of 9:00 AM – 7:00 PM. Subject participation will last roughly ten weeks, for a total of 30 appointments. Subjects will also receive cognitive tests before the training sessions begin and after all sessions have been completed.

If you would like to participate, please call (858) 534-9754 and leave a message.

Book Announcements

EVIDENCE OF HARM
by David Kirby
NOW IN PAPERBACK!

More Recognition for this amazing book: www.ire.org/history/pr/2005IREawards.html

Evidence of Harm receives investigative reporters and editors award.

Ready for a break from Autism?
How about Jenny McCarthy’s
latest in the Adult fun and funny?

Life Laughs: The Naked Truth about Motherhood, Marriage, and Moving On (Hardcover) by Jenny McCarthy

The author will donate a portion of her proceeds from this book to Talk About Curing Autism (TACA) a non profit organization that is focused on building the autism community by connecting people, families, friends and professionals and sharing information that can help children with autism be the best they can be. To donate or learn more visit www.tacanow.com

Special thanks to Jenny for being a friend to families affected by autism! We need and appreciate her!

FUN ACTIVITIES:

Pump it up is back for 2006:
Back by popular demand Monthly Pump It Up nights in Huntington Beach

What:	Bring your kids to a TACA Pump It Up party each month through August and possibly beyond!!!! All jumpers, including parents assisting, must wear socks. No socks, no jump. Socks are available for purchase if you forget them!!! This is a great time to see your TACA friends and meet new ones! Feel free to bring friends!
When:	Fourth Wednesday of every month
	• May 24, 2006 6:00-8:00 pm • June 28, 2006 6:00-8:00 pm • July 26, 2006 6:00-8:00 pm • August 23, 2006 6:00-8:00 pm
How Much: The cost is $6.00 per child. No charge for adults.
Where:	Pump It Up of Huntington Beach www.pumpitupparty.com/huntingtonbeach 16531 Gothard Suite C Huntington Beach 92647 The NW corner of Gothard and Heil - Look for small signs in front of the “HB Business Center” office park. Drive around back to #C.
RSVP:	Please RSVP by the Monday before each party to Barbara Cornish at barbara.cornish@Intel.com or (714) 897-3460 or Susan Tombrello at suso903tomb@verizon.net or (714) 841-3076.

NOTE: Want a similar function in your area??
Please contact us to volunteer, help organize and manage these for your community!

THANK YOU TO BARBARA & SUSAN FOR ORGANIZING THESE FUN EVENTS!

Art Party
For Pre-Teens and Teens
With Special Needs

Click to view

Saturday, May 6th
Irvine Terrace Park, Newport Beach
10:00 – 11:30 a.m.
*$8.00 to cover cost of materials - see details below*

Join ChAPS (Children and Adolescent Program Support) volunteers while having fun with friends! For an $8.00 material fee you will be provided with all the supplies needed to create a splatter paint masterpiece – canvas, paint, etc.

To reserve your spot, please mail your material fee to: Sandi Ames, 1930 Whittier Avenue, Costa Mesa, CA 92627 – a receipt along with location information will be returned to you to confirm your spot!

These masterpieces can go home with the artist, or can be included in our Community Awareness project, which offers local businesses an opportunity to hang our art along with a short description of our artists.

QUESTIONS? Call Sandi Ames at 949/645-4179
PRIOR REGISTRATION REQUIRED – NO WALK-ONS…
SPACE IS LIMITED – FIRST COME, FIRST SERVE…

Skosh Monahans is having TACA & Autism Awareness Night

In honor of autism awareness, Skosh Monahans in Costa Mesa will be having a fundraiser where 15% of the sales will go to Talk About Curing Autism (TACA). TACA is a local not for profit serving families affected by autism with support, education and community building efforts.

Skosh has a gluten free/casein free menu for our kids on special diets that is truly YUMMY & a favorite for many kids!

Please join us for fun and a good cause, some great food and spirits!

Date: Saturday May 13, 2006
Time: 4pm to closing
Location: Skosh Monahans
Address: 2000 Newport Blvd, Costa Mesa, CA 92627
Phone:(949) 548-0099

I will be there after the May 13th TACA meeting and hope to see you there!

Conferences

T h e R i g h t S c h o o l
T h e R i g h t W a y

A Presentation by Dr. Ron Kotkin

Finding a school program that matches the needs of your child is a constant challenge for parents of children with ADHD. Knowing what resources the public school provides and how to access them is critical to planning a successful educational experience. Dr. Ron Kotkin, a professional in the field of psychology and education, will explain the process of school selection, the importance of the 504 plan, setting up IEP meetings-what to ask, what to expect. Not to be missed!

Dr. Kotkin is a licensed psychologist with extensive experience in all phases of treatment for children with AD/HD. He is the co-author of Therapist’s Guide to Learning and Attention Disorders and director of the Day Treatment Program at the UCI Child Development Center. Dr. Kotkin has served as a consultant to school districts, presented at national and international conferences, and published in various journals.

Date: Wednesday, May 10th, 2005
Time: 7:00pm – 9:00pm
Location: UCI Child Development Center School Trailer
19262 Jamboree Road , Irvine 92612
(between Birch and Fairchild, across the street from Starbuck’s)
Contact: (949) 824 – ADHD (2343)

CHADD is a parent support group that provides a forum for continuing education for parents and professionals interested in learning more about ADD and ADHD in children and adults, CHADD also helps assure that children are provided with the best educational experiences and resources available for their needs. For more information on CHADD, please call Barbara Henry at (714) 630-5214 or visit our website at www.chadd.org

ORANGE COUNTY LEARNING DISABILITIES ASSOCIATION
PRESENTS A SEMINAR

FRIDAY, MAY 12, 2006 , 8:00 am to 5:00 pm
At the Newport Beach Radisson Hotel
4545 MacArthur Blvd., Newport Beach, CA 92660

UNDERSTANDING THE NEUROBIOLOGY OF ANTI-SOCIAL BEHAVIOR

Research has shown that people who have anti-social behavior many times exhibit brain dysfunction leading to extreme “dyslogic.” Many exhibit a lack of insight and foresight, a lack of empathy for animals and people, a low anger threshold, poor abstract thinking and social skills, a lack of fear and remorse, impulsivity, and an inability to realize the consequences of their actions or to learn from experience.1

The more we learn about the brain dysfunction that underlies much delinquency and criminality, the more successful we will be in truly rehabilitating offenders and preventing “at risk” children from turning to lives of crime.1 This seminar is concerned with aggression, conduct disorder, anti-social behavior, delinquency, impulsivity, violence and psychopathy as well as learning disabilities and the role that behavioral nutrition plays in the remediation of these types of behavior.

www.CrimeTimes.org
Anti-social behavior is of concern to:

parents, teachers, school administrators,
mental health workers, and
judges, lawyers, police, probation officers, justice system personnel

Presenters:

William Walsh, Ph.D. biochemist, Executive Director of the Pfeiffer Treatment
Center, a non-profit medical center dedicated to the research and treatment of
biochemical imbalances, Warrenville, Ill.

Jeremy Kaslow, M.D., allergist , specialist in learning disabilities and autism,
private practice, Santa Ana, CA.

Stephen Shoenthaler, Ph.D., Professor, Sociology and Criminal Justice, California
State University, Stanislaus, CA

Registration fee: $40 includes continental breakfast and lunch. Early registration is advised. Limited seating. For information: 949-646-0133, or 714-717-0021, or fax 949-642-7685 or oclda@comcast.net

Foothill Autism Alliance, Inc.
SEMINAR SERIES

P.O. Box 10193, Glendale, CA 91209
Phone: (818) 66-AUTISM

Partnering and Negotiating w/the School System to Meet the Learning and Technology Needs of My Child

When: Saturday, May 20, 2006 10:00am - 12:30pm
Where: Los Angeles, CA (near Lanterman Regional Center)

Assistive Technology and Augmentative/Alternative Communication - Workshop Series

Presented by: Koch-Young Family Resource Center & Lanterman Regional Center
When: Seven workshops will be presented from March through June 2006
Where: Location varies, see flyer

AUTISM ONE IS BACK in CHICAGO!

Dates: May 24-28, 2006
Location: Westin O’Hare Hote

Autism One 2006 offers two pre-conference days; Wednesday, 24 and Thursday, May 25 before the main conference, May 26 - 28 (Friday - Sunday). The main conference features five tracks to help parents and professionals make the most informed choices and decisions.

You may attend presentations in any track(s) or across tracks. Pick and choose the presentations to best meet your needs. The five tracks:

1.	The Science of Autism & Biomedical Treatments
2.	Behavior / Education / Communication Therapies
3.	Complementary and Alternative Medicine
4.	Adolescence and Adulthood
5.	Government/Legal/Personal Issues

In addition to the five major tracks, Workshops are Rountable Discussions deal with specific interests.

Parent mentors for new families will also be available. For more information on this amazing event please see www.autismone.org

My Best,
Ed Arranga
714.680.0792
http://AutismOne.org
earranga@autismone.org

Editors note: While Chicago seems far away – airplane tickets are cheap at around $400. Autism One is one of the best conferences out there offering more diversity and information than most. I hope to see you there too!

RDI: Going to the Heart of Autism
2-Day Workshop

Dr. Steve Gutstein dramatically illustrates the Relationship Development Intervention Program (RDI) via audience participation & hours of video taken from actual intervention sessions.

Date: Jun 9 - Jun 10
Location: Sacramento
Time: 9am-4pm; $275 by May 26 TBA
Contact Info: Kristin Adiska 866-378-6405 x 119
www.rdiconnect.com • adiska@rdiconnect.com

Preparing for Transition
Into a Preschool Program Or A Kindergarten Class

Transitions are tough, no matter how old your child is, or what their circumstances are. A child’s transition into a preschool program, as well as into a kindergarten class, can be almost overwhelming for most.

Our Preparing for Transition workshop will provide an overview of the laws that provide for a child’s right to an education, and a road map to successfully navigate these opportunities. We will be discussing the importance of assessments and how parents can ensure that their child’s assessment team, teachers and other providers are focused on their child’s individual needs when deciding on a placement and services. Tips and pointers on how parents can prepare and advocate for their child are a big focus of this workshop. We will wind up the day looking at ways parents can ensure that they have the tools, knowledge and comfort to be successful on “the big day” (their child’s IEP).

We hope that you will join us on:

Saturday, June 3rd
9:00 a.m. – 1:00 p.m.
Down Syndrome Assoc. of O.C.
151 Kalmus Drive , Suite M-5, Costa Mesa
Please RSVP to Sandi Ames, Parents CAN949/351-6380

This workshop is provided by Parents CAN in collaboration with DSAOC and is free. We welcome parents, teachers, therapists and others who want to learn how to navigate this critical time in the life of children with special needs.

California State University, Fullerton in collaboration with Orange County Office of Education, Learning Disabilities Association of California, Council for Learning Disabilities, Student CEC, Student TASH

Presents 1st Annual Special/General Education Collaborative
Monday, June 19, 2006, 8:00 am to 3:00 pm
Tuesday, June 20, 2006, 8:00 am to 3:00 pm

Dr. Lou Brown, Keynote Speaker Topics
6/19/06 “Inclusive Schooling and Post-School Outcomes”

6/20/06 “The Quest For Ordinary Life:
Preparing Individuals With Disabilities To Function Productively In The Real World”

Afternoon Break-out Session Topics Include:

No Child Left Behind
Best Practices in Orange County
LRE
Inclusion
Transition
Parent/District Collaboration
Post School Outcomes in Orange County

Location: Four Points Sheraton 1500 South Raymond Avenue,
Fullerton, California 92831,
Phone: (714) 635-9000
REGISTRATION INFORMATION- Fees include:
Continental breakfasts and lunches.

Early Bird (postmarked 5/1/06) Students & families: $25/day, $50/2 days Teachers, service providers: $50/day, $80/2 days Administrators,
IHE faculty: $65/day, $100/2 days

Regular advanced (postmarked after 5/31/06) Students & families: $30/day, $55/2 days Teachers, service providers: $60/day, $90/2 days Administrators, IHE faculty: $75/day, $115/2 days

Day of conference:
Students & families: $50/day Teachers, service providers: $80/day Administrators, IHS faculty: $100/day

Questions: E-mail jweiner@fullerton.edu Fax (714) 278-3110

The Links Which Bind Us
ADHD + AUTISM + LD + Special Education Laws and Advocacy

For Parents and Professionals Who Live or Work with Children Who Learn and Behave Differently - August 18-19, 2006 Ontario Airport Marriott

3rd Annual Summer Symposium Series August 18-19, 2006
POMONA VALLEY LDA
PO Box 1114 Claremont, CA 91711
FOR MORE INFORMATION (909)621-1494 or email PVLDA@aol.com

Grandparents Autism Network
Contact: Bonnie Gillman (714) 573-1500
New e-mail: gangrandma@cox.net

March 28, 2006

Dear Grandparents:

Please note that our name has changed from the “Grandparent Connection” to the Grandparent Autism Network.

While our name has changed, our goals have not. We are grandparents of children with autism who are passionate about improving the quality of life for our loved ones. Together, we can learn how to be more helpful to our children and grandchildren, raise awareness and support for autism and make a difference!

The Grandparent Autism Network provides a forum to exchange ideas, share resources and enjoy the camaraderie of other grandparents. Programs are presented in collaboration with recognized professionals who provide medical, educational, therapeutic and social autism support services. Membership is free, meetings are exclusive to grandparents and provide opportunities for questions and answers.Programs focus on:

Education: Learn about autism therapies, research, innovative technologies,available services and community resources.

Advocacy: Increase awareness and support for autism through community outreach, speaking, letter writing and/or lobbying on a local and national basis.

Social Events: Meet with other grandparents for dinners, theatre and other social opportunities.

Grandchildren Activities: Participate in group entertainment and planned excursions.

Please save the enclosed schedule of upcoming presentations which address how autism challenges families, the availability of local and national resources and current therapies for intervention. You are welcome to join us at any or all of the sites listed. Lectures are not sequential and may rotate from one location to another. Additional programs and locations will be added to our schedule in the months ahead.

Information about our dinner and tickets for the Pageant of the Masters is also attached. Reservations are very limited and it is recommended that you send in your check as soon as possible to join us for a very special evening. All proceeds will benefit the Autism Genetic Resource Exchange program which helps to accelerate autism research world-wide.

The Grandparent Autism Network
Invites you to join other grandparents

Wednesday, August 9, 2006
in Laguna Beach for dinner at

The Tivoli Terrace
(choice of Chicken or Salmon entrée) 5:00 p.m. and
The Pageant of the Masters at 8:30 p.m.

Tickets are very limited
$100 each/includes dinner and the Pageant

Please write your check to:
“Cure Autism Now”
And mail with your dinner entrée preference(s)
to: Judy Berkowitz
28052 Paseo Hacienda
San Juan Capistrano , CA 92675

Questions? Please call (949) 488-8089
Grandparent Autism Network

Presentation Schedule April-May 2006

The following topics will be presented by Nancy McGovern, PhD, Clinical Psychologist, County of Orange Health Care Agency, Parent Support Consultant to Regional Center of Orange County and Hedy Hansen, Parent Support & Education Program Manager at For OC Kids, CHOC/UCI Neurodevelopmental Center

Autism & Service Delivery - What services are children entitled to, how to help advocate for your grandchild and where to find reliable resources for your family.

Wednesday May 17, 2006 7:00 p.m. – 9:00 p.m.
Temple Beth Sholom
2625 N. Tustin Ave.
Santa Ana, CA 92705
(Corner of Tustin Avenue and Fairhaven)

Understanding Interventions for Autism – Learn about OT, PT,
ABA and Speech Therapies.

Wednesday, May 24, 2006 1:00 p.m. – 3:00 p.m.
Interagency Assessment Center
7340 La Palma
Buena Park, CA 90620
(Corner of La Palma and Lincolnbehind Walter Knott School)

For more information contact Bonnie Gillman at (714) 573-1500 or e-mail: gangrandma@cox.net

10.

Personal Note:

A big note of thanks to all the volunteers, attendees and sponsors of the recent Autism & Medical Breakthroughs conference. Close to 300 of my friends attended this great day full of David Kirby (author of Evidence of Harm), Dr. Jerry Kartzinel from Thoughtful House and the Hyperbaric people: International Hyperbaric Association and Oxy-health. Thank you Jerry & David! What a couple of heroes!

TACA was able to provide the low cost $35 per person (early registration) conference WITH A LUNCH with special thanks to our conference sponsors. We would like to thank:

Presenting Sponsors
International Hyperbaric Assoc.	www.ihausa.org
OxyHealth Corporation	www.oxyhealth.com	(562) 906-8888


Exhibitors
The Listening Center	www.theswaincenter.com	(714) 979-1160
Kirkman Labs	www.kirkmanlabs.com	(800) 245-8282
Cure Autism Now	www.cureautismnow.org	(323) 549-0500
Autism Solutions for Kids	www.autismsolutionsforkids.com	(949) 221-0126
Stillpoint Center Dr Woeller	www.mystillpoint.com	(951) 693-2267
Attorney at Law – Elizabeth McCoy Trusts & legal information		(760) 723-8906
Sensaria – Jamie Davis	www.mysensaria.com/jamie	(562) 431-1866
Brain Therapeutics	www.strokedoctor.com/	(949) 367-8870
Autism Educational Law		(951) 277-0030

Special thanks to the volunteers who made this day happen in perfect sync – which include: Jen & Jerry Lundy, Elizabeth Kilpatrick, Li Chiang, Marie Kenney, Jamie Davis, Julie & John Landon, Bill Ottman (my dad & best bud) Diane Gallant, Susan Kristie, Stephanie Ellery, and Tami Duncan and others – thank you! Without the help of this team TACA could not make these low costs, 1 day conferences happen.

Please stay tuned – we will have the audio CD’s available off SHOP TACA in the next few weeks. We are looking into providing these conferences in Los Angeles and in San Diego over the next 12 months. We are looking for a facility to host these locations – if you have an idea please drop me a note. Please stay tuned in this enews for details.

Now onto my favorite topic – my family. Here is the update! Life is moving at a seemingly quicker pace – it seems like yesterday Lauren had pig-tails and was missing her front teeth and now she is 23 years old! The same goes for Jeff – he is now the little man at 9 years of age. He is starting to shoo me out of the bathroom. Where does the time go? I feel like George Jetson “Jane get me off this crazy thing!”

As the school year moves rapidly to a close for Jeff, we have watched him experience amazing growth and more independence this year. I have to constantly remind myself to “back off mommy bear” and let Jeff take on some responsibilities including: tying his own shoes, button & zipping just about anything, making his own (GFCF) peanut butter and jelly sandwich, calling a friend and asking him to come over and play, ordering his GFCF meals, and prepare for and do 2 nd grade testing in his 2 nd grade class – like his peers. This years report card looks almost a lot like Lauren’s report card back 14 years ago. What a blessing!

Watching Mr. Jeff (and Lauren for that matter) grow, do, be has been a fantastic voyage. While the bumps early on were enough to knock you to the ground begging for mercy - today is a different story. He is getting better and improves almost everyday. He is a marvel to watch and such a job in our lives to see him bloom. (Not such a masculine word but I am sure you get my drift.)

While I know some of my TACA friends may feel lost, hurt, scared, anxious – know this: hard work by you and especially your child WILL PAY OFF. It has for my family. The tough part is it takes time, consistency, prayer, and a wholelotta love. The future is not yet defined. The best therapy for your heart and soul is watching your kids get better and change their outcomes of a diagnosis written on paper.

Keep loving those babies and doing your hard work. Look into their eyes and believe in all the possibilities. They are right there in front of you. Make the dreams happen for you and them.

We keep working hard and our kids keep getting better. Keep up the great work – there is no great reward.

Hugs, thanks, and BE SAFE
Lisa A Jeff's mom

And Editor: Kim Palmer (thanks Kim!)

Web Page for TACA Group: www.tacanow.com
check it out and let us know your thoughts

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.IF YOU DO NOT WANT TO RECEIVE THESE EMAILS, just respond and I will be happy to remove you from the list.

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Art Party For Pre-Teens and Teens With Special Needs

Date: Wednesday, May 10th, 2005

Time: 7:00pm – 9:00pm

Location: UCI Child Development Center School Trailer 19262 Jamboree Road , Irvine 92612 (between Birch and Fairchild, across the street from Starbuck’s)

Contact: (949) 824 – ADHD (2343)

Art Party
For Pre-Teens and Teens
With Special Needs

Location: UCI Child Development Center School Trailer
19262 Jamboree Road , Irvine 92612
(between Birch and Fairchild, across the street from Starbuck’s)