A living room support group is one of the loudest voices in the debate over autism, vaccines, and treatment. Are they right?

By SAM MILLER

THE ORANGE COUNTY REGISTER

It was a sweltering June morning in Washington, D.C., and Lisa Ackerman was at the front of a protest march from the Washington Monument to the Capitol building.

Behind her, parents filled the road, five or 10 marchers across, as far as she could see.

The mother of an autistic son radioed back to the starting point and asked another organizer to tell her when the last marchers had left the monument. She waited and waited, and when she finally reached the Capitol she got word: The end of the line still hadn't left.

Ten people across. For 1.5 miles. An army!

In eight years, Lisa Ackerman had grown her living room support group in Newport Beach into a national movement involving thousands of parents of children with autism. With the help of a famous friend – Playboy-Playmate-turned-family-author Jenny McCarthy – Ackerman had shoehorned the supposedly "fringe" views of tens of thousands of parents into the mainstream.

But she was opposing the federal government, the medical establishment, the New York Times, larger autism groups and, depending on where one falls in this debate, science itself.In 2000, Ackerman posted an invitation on a Yahoo! message board to a support group she was starting.

As research continues, it is, in a sense, not yet clear whether she is the hero or the villain of this story.

"Are you struggling with gluten-free diets? Managing your school district and your child's behavior? I am too!"

Months earlier, her son Jeff had been diagnosed with autism, a brain disorder that, among other things, inhibits communication and relationships.

She'd gone to three sessions at a local support group, and found it unsatisfying.

"All these women want to do is complain," she says. "I want to problem-solve, get our kids to a better place."

Ten parents replied to her Yahoo! post, many also fed up with their local support groups.

"We were tired of crying," said Moira Giammatteo, who drove an hour from the San Fernando Valley to go to the meeting in Ackerman's living room. "We had no plan, and that was freaking us out."

The parents realized this group could be different. Here, they felt safe to talk about the wheat-free, dairy-free diets that many families put their autistic children on – but that many pediatricians say doesn't work.

But it does work.We've seen it! What a relief, to be reassured you aren't crazy.

Those families formed TACA – Talk About Curing Autism. By 2005, there were 2,000 members at chapters throughout Southern California.

Then Jenny McCarthy called.

•••

By 2005, McCarthy was no longer the ditzy blonde from MTV and Playboy, but a best-selling author who wrote about motherhood. That was disrupted when her son, Evan, was diagnosed with autism.

A friend introduced her to TACA, and Ackerman became McCarthy's guide.

Ackerman is, in real life, much like McCarthy's public persona. She curses. She's unafraid to talk about icky subjects. ("Tell me about his poop" is usually her first question for a distraught parent. Autistic children, she says, are sensitive to diet, and too much yeast in their bodies gives them fits.)

She's colorful and clever ("I'd carve out my liver with a rusty melon-baller for my kids," she says), and she can recall minute details of scientific research. She's frames issues like a skilled politician. "These kids aren't just a tax burden," she says.

She and McCarthy hit it off.

"What Jenny was drawn to was hope," says Ackerman. "Everybody was talking about placement, and managing the chaos. We were talking about recovery. False pessimism is more dangerous than false hope."

As Evan improved, McCarthy told Ackerman her next book would be about autism. She said she was going to get herself on Oprah.

Lisa and her group had been faxing, phoning and emailing Oprah for years. They couldn't even get a response.

A few months later, Ackerman was in the second row of a TV studio, watching McCarthy tell Oprah what they'd been screaming for years: Autism has an environmental cause, and it has, if not a cure, treatment.

Through tears, Ackerman text-messaged everybody she knew.

"Be ready for the tidal wave."

•••

McCarthy gave a popular voice to a viewpoint that had largely been rejected by mainstream institutions – that the sharp increase in autism in recent years has an environmental cause, such as toxins in childhood vaccines.

"To anybody who comes to this issue from the environmental and recovery side of this debate – the idea that something happened to these kids, and it's probably a toxic exposure – Jenny McCarthy is the biggest thing to happen since the word autism was coined," says Dan Olmsted, editor of the blog Age of Autism, which attracts thousands of readers a day.

(TACA co-sponsors the blog, and Ackerman occasionally writes for it.)

The American Academy of Pediatrics, the M.I.N.D. institute at the University of California at Davis, and the Centers for Disease Control and Prevention all say current evidence doesn't support a link between vaccines and autism, and that without vaccines, epidemics like measles – which kills about one in 1,000 people who get it – could return from near-eradication.

"It's bad enough that they are putting their own children in danger, but when you send somebody into the community without vaccination, you lose the herd effect" that protects everybody, says Lisa Randall, executive director of Voice For Vaccines, a non-profit group under the umbrella of, among other organizations, UNICEF and the World Health Organization.

Ackerman – whose TACA Web site has published or linked to thousands of pages of research – insists the science is not settled. Thousands of parents have seen effects from vaccines, she says, and that must mean something.

Because Ackerman got McCarthy involved, Olmsted says, that view is "not out on the loony fringes any longer."

•••

The e-mails started coming in after Oprah, dozens a day. "Holy crap, autism is treatable?" parents wrote. TACA shifted its plans and went national, with groups in eight states.

"Had to," Ackerman says. "Jenny forced us."

More exposure means more controversy, and some of those e-mails – not many, but some – called Ackerman a misguided fool. Olmsted says some people see Ackerman and her allies as child-killers for challenging vaccinations.

But, she says, TACA and groups like it are getting respect they never did. Five hundred media outlets covered the rally in Washington, D.C. Half, she said, "were pathetic." The rest, by her standards, "hit it out of the park."

"We just don't want any more people to join our club," she says. "That's why I have a sense of urgency."

Go to autism.freedomblogging.com to read the Orange County Register's autism blog, which launches this week.

TACA's Reply

Dear Orange County Register,

Autism is a national emergency affecting one in 150 children. We appreciate the Orange County Register's commitment to covering this issue and bringing attention to Talk About Curing Autism.

The "Green Our Vaccine" rally is one of more than 200 events TACA will manage in 2008. TACA is about supporting and educating families, and empowering them to make the best choices for their children. Treatment for autism is possible, and TACA's goal is to convey that message to all families living with autism. TACA has never been anti-vaccine. Whether or not to vaccinate a child is a parent's choice to be made in conjunction with their medical team. TACA does support toxin-free vaccines and a safe vaccine schedule.

For additional information on TACA's mission and programs please visit www.tacanow.org.

Sincerely,

Lisa Ackerman

A full-time reporter, Sam Miller, is writing an Autism Blog for the Orange County Register. It was launched on June 29 and will be a daily blog just for autism.

The Orange County Register is one of the largest newspapers in Southern California and is read by many. To our knowledge this is the first blog with a dedicated, full time reporter.

Corporations and entrepreneurs see an economic opportunity in food allergies. The market for products is projected to reach $3.9 billion this year.

By Annys Shin, Washington Post Staff Writer

Sunday, June 8, 2008; Page A01

Kari Keaton is the sort of customer most businesses used to hate. The Rockville mother lingers at the grocery store, poring over ingredient labels. She calls food manufacturers and interrogates their customer service representatives about what sorts of foods get processed in the same facility and probes them on the meaning of "natural flavoring." And after all that effort, she still may not buy their product.

The way Keaton sees it, she has little choice. Her two sons, 10 and 15, suffer from severe food allergies. Keeping them from accidentally eating something that could trigger a fatal reaction has become the former IBM field manager's full-time job.

But Keaton, 52, and consumers like her are increasingly coveted by corporations and entrepreneurs who see an economic opportunity in catering to the needs of people who have food allergies or celiac, a condition treated by avoiding gluten. Marketing to the food-sensitive has become so widespread that the Girl Scouts now sell three kinds of milk-free cookies, Anheuser-Busch has a gluten-free beer and Kellogg's makes Pop-Tarts in nut-free factories.

The market for food-allergy and intolerance products is projected to reach $3.9 billion this year, according to Packaged Facts, a New York research firm. And the market for gluten-free foods and drinks is expected to hit $1.3 billion by 2010, up from $700 million in 2006, according to research firm Mintel.

An estimated 12 million people in the United States have food allergies, and another 2 million have celiac disease, a disorder in which the body's immune system attacks itself when exposed to gluten, a protein found in wheat, barley and rye. Those figures are expected to rise. The number of children with peanut allergies alone has doubled in the past decade. Food-induced anaphylaxis, a potentially fatal allergic reaction, causes about 30,000 emergency room visits and 150 to 200 deaths annually, according to the Centers for Disease Control and Prevention in Atlanta.

Medical experts don't know why the number of people with food allergies is increasing. Theories include reduced contact with germs, exposure to certain environmental pollutants and, in the case of peanut allergies, the way peanuts are processed and when they are introduced into people's diet. None of the theories is backed by much research.

"We don't know if some of them are true or there's some truth to all of them," said Marshall Plaut, chief of the allergic mechanisms section at the National Institute of Allergy and Infectious Diseases.

Until scientists learn more, the prescription for people with life-threatening food allergies or celiac is to avoid the foods that make them sick, a task that is getting easier.

Whereas a decade ago, the "free from" food market consisted of small manufacturers whose products were sold mainly in health-food stores, today it encompasses an ever-growing list of start-up companies, mainstream retailers such as Safeway and Giant Food, and some food industry giants such as General Mills.

The ripple effect goes beyond the grocery aisle. In April, Deep Dive Media of Los Angeles, which runs health information Web sites, paid an undisclosed sum to buy PeanutAllergy.com, a site started by an affected parent. In March, Sciele Pharma paid $29 million to buy Twinject, an epinephrine auto-injector that competes with Dey L.P.'s Epipen. Epinephrine is used to treat anaphylaxis.

Food manufacturers have had to pay more attention to the needs of people with food allergies since the federal government in 2006 began requiring ingredient labels to disclose whether products contain milk, eggs, peanuts, tree nuts -- such as almonds and cashews -- fish, shellfish, soy and wheat.

Gluten is not on that list, but many manufacturers disclose it. Some companies, such as Stonyfield Farm, use gluten-free in their marketing. In April, General Mills said it had reformulated Rice Chex to be gluten-free.

"Rice Chex . . . was truly our effort to meet the needs of these consumers," said Kevin Farnum, director of sanitation, quality and regulatory operations for General Mills. "We know there is a great demand among consumers to have free-from labeling."

Other major food manufacturers such as Kellogg's and Campbell Soup also sell products safe for people with food allergies and celiac, but they have been more cautious about embracing the free-from claim. Unlike with organic products, there are no government standards for what "free-from" means.

The steps General Mills took to insure that Rice Chex was gluten-free also illustrate how hard it can be for a large manufacturer to do so. In addition to tweaking the recipe, the company had to review its production process, from the time the rice is harvested to when the cereal is packaged, to be certain that gluten would not get into the product.

New, smaller companies are more nimble. They don't have existing factories to convert. They can build facilities that are peanut- and tree-nut-free from day one. Many entrepreneurs, such as Eileen Moriarty Silva, are doing just that. Two years ago, she started soy-nut butter maker Simple Food in Amesbury, Mass., after selling her first soy-nut butter company in 2000. "I wanted to get back into the business," she said. "I knew there was just plenty of opportunity, and a lot of customers just needed more food out there."

The National Association for the Specialty Food Trade, a New York trade group, estimates that 300 of its 2,800 members offer more than 7,000 no-allergenic products, compared with five years ago, when about 50 members did, spokesman Ron Tanner said.

Increasingly, their customers don't necessarily have food allergies or celiac. They just think they do. "As much as 28 percent of U.S. citizens believe they are intolerant to some foods," said Mintel spokeswoman Joanna Peot. "This trend towards self-diagnosis has widened the 'free from' market from those who have to avoid certain foods to those who make a lifestyle choice for whatever reason."

Internet start-ups are also seeking to satisfy that demand. Heather and Brian Selwa started online store Peanut Free Planet two years ago in Cicero, Ind. Competitors Patrick Felkner and Steve Rubinstein launched Allerneeds.com, another peanut-free retailer, in Anaheim, Calif., four months ago.

"We were trying to jump on it before it really starts hitting [the mainstream]," Felkner said. "There's a market opportunity, there's no doubt about it."

Brick-and-mortar stores are clearing space on their shelves, too. "We've seen a dramatic increase in the number of customers looking for these type of products really in the last few years," said Safeway spokesman Greg TenEyck. "We've greatly increased the number and types of products we are offering."

The same thing is happening at Giant and at Whole Foods Market, which has an array of private-label products and a designated gluten-free bakery in North Carolina.

All this is good news for food allergy and celiac sufferers, said Anne Munoz-Furlong, co-founder of the Food Allergy and Anaphylaxis Network in Fairfax. "They want to be able to go to the grocery store and buy food like everyone else," she said.

From the Huffington Post

By David Kirby

It was a great honor indeed to be invited to participate in the annual Judicial Conference of the United States Court of Federal Claims, which will be held this November in Washington, DC, to talk about the vaccine-autism debate in America.

The honor was heightened by the facts that the invitation was extended by the Chief Special Master of the Court, (which also oversees the Autism Omnibus Proceedings in so-called "Vaccine Court"), and that I would be appearing with an illustrious group of panelmembers.

In his June 10, 2008 "Save the Date" letter, Chief Special Master Gary Golkiewicz wrote:

The panel is tentatively titled "Vaccines: Balancing Benefits with Parental Concerns (the autism issue?)." It will be moderated by Sharyl Attkisson, a reporter with CBS Evening News. The panelists will be Arthur Allen, author of "Vaccines"; David Kirby, author of "Evidence of Harm"; Dr. Ed Marcuse, Professor of Pediatrics at the University of Washington, who has served as a member and Chair of HHS' National Vaccine Advisory Committee, and as a member of CDC's Advisory Committee on Immunization Practices; and, Dr. Bernadine Healy, Health Editor, TJS News and World Report and former Director of the National Institutes of Health. There is no doubt that this discussion will be lively and informative.

A second vaccine panel to follow is called, "Vaccine Compensation Under the Act: A Mix of Science and Policy?," and moderated by Senior Judge Loren A. Smith, who was the Chief Judge when the Vaccine Program first began at the court in 1988.

The panelists here are Kevin Conway, a family attorney since the Vaccine Court program's inception; Randolph Moss, a partner at WilmerHale, which represents vaccine manufacturers; Dr. Paul Offit, Chief of Infectious Diseases at the Children's Hospital of Philadelphia, and co-inventor of the rotavirus vaccine, RotaTeq; Marguerite Wilner, former Vice-Chair of the CDC's Advisory Commission on Childhood Vaccines; and Ruth J. Katz, Dean of the School of Public Health at The George Washington University.

"I believe wholeheartedly that the Bench and Bar must communicate periodically to improve the system of justice," wrote Chief Special Master Golkiewicz, who added that, "I believe this Conference program - the panel discussions of general vaccine policy issues and of the information underpinning vaccine compensation decisions - can provide that important dialogue."

"With these different perspectives," he said, "this promises to be an interesting discussion!"

I agree with the Chief Special Master, and thank him for including me in such an important event.

But now we learn that the first vaccine panel (though not the second one) has been cancelled, as I was told yesterday by this letter from His Honor:

I am very sorry to inform you that it was decided to cancel the panel program, on which you were scheduled to participate, as part of the Vaccine session of the Court's Judicial Conference. By way of explanation, the Court's planning process starts with defining a broad overarching theme, moves to identifying speakers, and subsequently focuses through meetings and discussions of the planning committee on actual content of the panels.

This process moves very quickly as materials must be to the printers by mid-July. As the planning of the vaccine session developed, it became apparent that the discussion anticipated from this panel did not fit the goal of furthering the Bar's understanding of litigation under the Vaccine Compensation Program before the Special Masters or the Court's judges (in fact, another non-vaccine related panel was eliminated after discussions determined that it did not meet the Conference goals of focusing on litigation related issues.)

While I have no doubt that your discussion of vaccines' benefits and concerns is extremely important to the overall understanding of the immunization program, and would be enlightening to all, it is simply a discussion not consistent with the Court's Conference but is better suited to another forum. Thank you for your support and my sincerest apologies.

I publish both letters here in the public interest, and without further comment - though I still extend my thanks to Chief Special Master Golkiewicz for having invited the panel to speak in the first place. It would have been an interesting event, indeed.