E-News July 2004

Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for July 2004 - #2. As always, email your thoughts and/or questions. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

If this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for the Southern California autism support group called TACA. As always, email your thoughts and/or questions to us. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

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. We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.

In This Month's Edition of TACA e-news:

  1. Next TACA Meeting Information
  2. Upcoming TACA Costa Mesa schedule & other TACA meeting schedule info –
    August 2004 – December 2004)
  3. General News:
    a. State of California reports Autism Cases in Decline! (AGAIN!)
    b. Researchers working on better treatment, testing for Autism
  4. Vaccine News
    a. Suit Links Vaccines to Autism (A TACA FAMILY ARTICLE!)
    b. Charismatic doctor under attack – Dr Andrew Wakefield
  5. TACA 2005 Planning Meeting & Mentor training
  6. TACA Announces: New Parent Seminar Series – Newly scheduled date
  7. Dr. Jerry Kartzinel Medical Seminar AUDIO TAPES or CD’S
  8. Need more support? MORE Coffee Talk!
  9. Social Events
  10. Fundraisers
    a. Cure Autism Now WALK NOW in Anaheim
    b. TACA Picnic & Fundraiser at Irvine Regional Park
  11. Upcoming Conferences & Seminars
  12. Personal note

1. Next TACA Costa Mesa support group meeting

Date:

Saturday, August 14th (always the 2nd Saturday of each month)

Time:

1:00pm – 5:00pm

Topic:

Parent Panel – a group of six parents / a total of eight children who have lost or on the verge of losing their Autism diagnosis. Based on an overwhelming demand from TACA members, this exciting meeting will focus on a parent panel of experienced families who have helped their child approach or reach recovery from Autism. Please join us for this exciting meeting!

Place:

VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa

 

 

(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.) And remember, we are still a non-faith based group!

Directions:

405 FWY South, Exit Bristol
Right on
Bristol
Left on Baker
Go under FREEWAY.
The
Vineyard Church is on the corner just after the freeway - turn left onto the freeway access road, make FIRST right into the Vineyard's parking lot.


2. UPCOMING TACA Costa Mesa Meeting Schedule

All meetings at the Vineyard:

September 11, 2004: IEP’s for absolute beginners! A basic IEP (Individualized Education Plan) overview by parents for parents on the basics to understand on how the IEP process works, tips & tricks and how to be prepared. Just in time for school!
October 9, 2004: Speaker being confirmed
November 13, 2004: Social Skills – Jessica Postil – Autism Spectrum Consultants
December 11, 2004: School District roundtable
Much more is being planned for 2005! Stay tuned!

TACA Has Seven Southern California Meeting Locations:

1.
Costa Mesa
2nd Saturday of each month (info in item #1 for meeting topics and details)
2. West Hills: (the Valley, man) 1st Sunday of every month, 7-9 p.m. Location: Jumping Genius – 22750 Roscoe Blvd., West Hills (the corner of Roscoe Blvd. & Fallbrook Ave.) ... -- Info: Contact us
3. San Diego:

4th Tuesday evening – 6:30- 8:00 p.m. – Info: Contact us

July 27 - Video Night – 2 autism key movies – MUST SEE!
August - NO MEETING, GONE FISHIN’
September 28 – Dr Kurt Woeller – DAN! Physician – The latest in Autism Medical Intervention

4. Corona:

3rd Saturday – 1:30–4:30 pm - Corona Library. For more info: Contact us

August 21 – speaker to be announced
September -- speaker to be announced
October 16 -- Danelle Kern - Hippotherapy (horseback riding) and Physical therapy

5. Torrance: 3rd Monday of each month at Whole Foods Market on PCH in
Torrance – 6:30 - 9:00 p.m. For more info: Contact us
6. Visalia:

(typically) 4th Wednesday of each month at Visalia United Methodist Church – 6:30 - 8:30 p.m. For more info: Lynne Arnold

August 18: - speaker to be announced
September 15: - Deborah Swain from the Swain Center re: Tomatis Listening Therapies

7. Santa Rosa: (typically) 2nd Tuesday of each month at Swain Center – 795 Farmers Lane, Suite 27, Santa Rosa – 7:00 - 8:30 p.m. For more info: Contact us

3) General News

Article A: State of California reports Autism cases on decline AGAIN!

According to information released today by the California State Department of Developmental Services (DDS), California's developmental services system has just experienced the first ever nine month sustained reduction in the numbers of professionally diagnosed new cases of full syndrome autism being added to California's developmental services system.

The data compares new intakes from the most current three consecutive quarterly periods (October 2003 through June 2004) to all other previous October through June time periods.

Not only did the most recent three consecutive quarter period produce the first sustained reduction in the 35 year history of California's developmental services system (197 fewer new cases then the previous October through June period), but the most current recently completed quarter, April 2004 through June 2004, produced the all time largest reduction of any quarter (108 less cases) in the history of the system.

DDS only reports professionally diagnosed cases of full syndrome DSM IV autism and DOES NOT include PDD, NOS, Asperger's Syndrome, or any other autism spectrum disorder in this reporting category. The numbers reported by DDS do not include children under the age of three years old.

Historically, the four to six year old age group dominate the new intake population. Within the past few months, for the first time, children born in the years 1999 and 2000 are now entering the system.

What makes this historic development of this very recent reduction in new cases of autism so important is that those children from the birth cohorts of 1999 and 2000 are now entering the system. First with the year 1999 and much more so with year 2000, these are the widely recognized first two years of the beginning of the serious effort to substantially reduce the amount of the mercury containing preservative Thimerosal in childhood vaccines.

Could this be the beginning of the decline of the autism epidemic? Have we discovered a "smoking gun" environmental factor that has contributed to the epidemic?

California, with the world's best record keeping system, is the de facto "canary in the coal mine" in tracking new cases of autism. In 1999 the first DDS report on autism established for the first time the existence of a growing autism epidemic. A report released by DDS in 2003 documented a doubling of the autism caseload from 1999-2002.

Recently published groundbreaking research initiated and funded by the U.C. Davis M.I.N.D. Institute, and conducted by Dr. Mady Hornig at Columbia University, has established a biological mechanism in an animal model that combines genetic susceptibility and Thimerosal poisoning which results in behaviors in the animal model very similar to human autistic behaviors. Autism like brain pathology was also discovered in these animals. Many more of these independent studies currently being conducted at M.I.N.D. and at other facilities around the world will shed more light on the viral/bacterial/toxin interaction with genetic susceptibilities in the coming months.

Please see the DDS data below, and review the attachments which include an important chart and complete data spread sheet.

 
# of new cases
Increase over previous three quarter period
April though June increase from previous year
Oct. - Dec., 1999
Jan. - March 2000
1331
--
--
April - June 2000
 
Oct. - Dec., 2000
Jan. - March 2001
1930
599
176
April - June 2001
 
Oct. - Dec., 2001
Jan. - March 2002
2314
384
182
April - June 2002
 
Oct. - Dec., 2002
Jan. - March 2003
2391
77
15
April - June 2003
 
Oct. - Dec. 2003
Jan. - March 2004
2194
197
108
April. - June 2004

Article B: Researchers working on better treatment, testing for autism

Doctor says researchers getting better understanding of disease
Peggy Andersen Associated Press July 9, 2004

SEATTLE - Early intervention and treatment of autistic children can yield significant results, an expert said Thursday.
Persuading the insurance industry that treatment is worthwhile is complicated by a lack of studies, but that situation is changing, said Dr. Geraldine Dawson, director of the University of Washington Autism Center, in a keynote address to the Autism Society of America's 35th annual conference.

The three-day session began Wednesday. Autism is a brain disorder that can profoundly affect language skills and social interaction.

There are varying levels of disability in the autism spectrum, ranging from those who are totally cut off from others to high-functioning individuals who can excel in the mainstream.

The National Institutes of Health is collaborating now with the National Alliance for Autism Research to pool the available research in genetics, brain structure and chemistry, diagnosis and treatment.

" I think that's going to change the landscape ... over the next three to five years," Dawson said, urging parents, who often blame themselves for a child's lack of progress, "not to put much weight on studies done even 10 years ago."
For example, while scientists long believed most progress in challenging autism was made before age 6, researchers now find tremendous changes are made at elementary school age, between 5 and 10. "We're really getting a very different picture," Dawson said.

The belief that 50 percent of autistics would "never develop connective speech" has changed for the better. Now the figure is 25 percent, and the goal is zero to 10 percent.

" I believe we'll probably be able to get there," Dawson said. Some studies suggest the disorder might affect 1 in 250 newborns.

That's 10 times the estimates of a decade ago, though many scientists believe the increase reflects better diagnosis. As many as 1.5 million people nationally have some form of autism, the society said.

The optimum amount of intervention is a subject for debate. For a time, experts recommended 40 hours weekly of one-on-one instruction -- a tough standard for working families.

" We have no idea if that's necessary," Dawson said, or even feasible with toddlers, who need naps and other care. But the general rule for intervention, she said, is the sooner the better.

Diagnostic tools have improved to the point that autism can be reliably detected by age 2, but the average age of diagnosis is about age 4, Dawson said.

While she and other experts are working to make earlier diagnosis possible, Dawson said alert parents and pediatricians will always be crucial to the process. Genetics is a factor in the disorder, she said. If an identical twin has autism, in 95 percent of cases the other twin has at least social or language difficulties.

Genetic research could lead to a blood test allowing diagnosis as early as three to six months, she said. Other possible factors that could contribute to the disorder include infection, injury, diet or chemical toxins, she said. Researchers have not yet identified the gene at issue in autism. Nor are its physical effects fully understood.


4.            Vaccine News

a) Suit links autism to vaccines

HELP OR HARM: One study points to Thimerosal, a preservative that contains mercury, as the culprit.

By HENRI BRICKEY / The Press-Enterprise

Just after turning a year old, Evan began to withdraw into his own world. He would sit by himself and become fixated on the red light on the family TV.

He became emotionally detached from his parents and would cry uncontrollably for hours.

When Evan turned 2, Ivy and Nathanial Seeds took their son to a neurologist. He was diagnosed as autistic. The Seeds are convinced that vaccinations containing Thimerosal that were given to Evan in the first year of his life contributed to her son's autism.
Her concerns are shared by many parents, doctors and scientists who have been part of a contentious debate about a mercury-based preservative in childhood vaccines.

In May, the Institute of Medicine, a nonprofit institution that advises the National Academy of Sciences on health policies, concluded there is no connection between Thimerosal and autism. The announcement was based largely on a series of studies conducted in the United States and Europe since 2001 that compared the rate of autism in children who were vaccinated against children who weren't vaccinated.

"The overwhelming evidence from several well-designed studies indicates that childhood vaccinations are not associated with autism," said Marie McCormick, professor of Maternal and Child Health at Harvard who also chairs the Institute of Medicine's Immunization Safety Review Committee.

Valerie Berta / The Press-Enterprise

Ivy and Nathaniel Seeds say the mercury-based preservative in childhood immunizations made their son autistic.

It's the same stance many pediatricians and the U.S. Centers for Disease Control and Prevention take.

A new scientific report linking a preservative in childhood vaccines to autistic-like symptoms in mice is the kind of evidence Temecula attorney Ralph Peters' says he was waiting for.

He represents dozens of Inland parents who have autistic children, however many experts disagree with Peters.

Two years ago, Peters was one of about five attorneys nationwide claiming an autism epidemic caused by mercury in childhood vaccinations has disabled a generation of children. Today, nearly 40 lawyers across the nation are suing vaccine manufacturers on the grounds that Thimerosal, a common preservative used in the vaccinations, can cause neurological disorders such as autism. Thimerosal is an organic preservative containing 50 percent ethyl mercury. It has been used in vaccines since the 1930s.

The Centers for Disease Control says mercury contained in Thimerosal is not to blame for autism.

The Institute of Medicine's announcement was a setback to his case, the Temecula attorney said. But Peters, 49, points to a study released in June by researchers at Columbia University concluding low doses of mercury - like the amount used in children's vaccines - can lead to autistic-like symptoms in mice with certain genetic characteristics. Peters says the study shows autism isn't naturally occurring.

The Columbia study, which was funded in part by grants from autism support groups as well as The Ellison Medical Foundation, injected several groups of mice with Thimerosal at levels equivalent to the amount given to human children. Most of the mice emerged from the test unharmed. One group of mice that was genetically sensitive to mercury showed "profound behavioral and neuropathology disturbances," the study reported.

Peters said the study helps show that autism results from a combination of genetics and environmental factors.

" Obviously, this is not a case of Darwinian selection," Peters said.

Ivy Seeds of Corona is one of the parents suing the pharmaceutical companies. She says the Columbia study may be the first step in making a solid connection between Thimerosal and autism.

" I hope that it propels them to do more research and prove that Thimerosal is terrible for our children," said Seeds.

Some medical experts warns that the Thimerosal controversy could end up harming children if parents fail to immunize their children over fears of autism.

" These vaccines are preventing real diseases with really serious consequences," McCormick said.

Temecula pediatrician Donna Krepak says more parents are asking questions before vaccinating their children nowadays. But only about 1 percent of parents that come into her office ask if vaccines will give their children autism, Krepak said.

" The risks of getting these diseases are much more risky than getting autism from a vaccine," Krepak said. "You can't be afraid of everything, otherwise you would stay in your house and never go outside."

Between 1998 and 2002, California's autistic population nearly doubled - from 10,360 to 20,377, according to the Department of Developmental Services. California's population increased less than 10 percent overall in the same time.

Others in the scientific community say rising levels of autism are a result of better methods of diagnosing the disorder.

Seeds blames the high number of vaccines given to her son, at least in part, for his autism. Seeds' son Evan, 4, received 27 vaccines in two years - all of which were recommended by pediatricians for Evan's protection, according to Seeds, 42.

Up until about 20 years ago, children received fewer than 10 vaccinations in the first few years of their life, according to the National Vaccine Information Center. In the 1980s and '90s, the number of required vaccinations roughly doubled. Today, many children are given 22 shots by the time they reach the first grade, according to the Association of American Physicians and Surgeons.

As more vaccines came onto the market, more Thimerosal was being injected into children, leading some to say the accumulation of mercury has lead to a nationwide autism epidemic. In 1999, the American Academy of Pediatrics asked vaccine manufacturers to stop the use of Thimerosal in childhood vaccines as a precautionary step.

Many other vaccines have followed suit, creating Thimerosal-free vaccines. But without a recall from the Federal Drug Administration, remaining stocks of Thimerosal-laced vaccinations can remain in circulation until 2005, according to Sensible Action for Ending Mercury-Induced Neurological Disorders, a leading autism support and advocacy group.

Stockpiled vaccinations for Japanese encephalitis and tetanus still contain Thimerosal, according to the group. Flu vaccines are still manufactured using the Thimerosal preservative, according to the National Vaccine Information Center.

As long as there's still Thimerosal in any vaccination, Seeds said she'll continue to pursue her suit against the pharmaceutical companies.

" I want justice," she said. "I don't want any family to come into my autistic world with me. It's hell."

Schwan Park of Temecula contacted Peters three months ago - about a year after his 2 -year-old son Max was diagnosed with autism.

Park, 38, said he knows battling the pharmaceutical companies won't be easy. He said that he doesn't expect to win any money in court.

" By the time all is said and done, we're not going to get anything," Park said

The suit is a way to warn other parents about are risks associated with vaccines, several of which still contain Thimerosal.

The issue has caught the attention of the government.

The U.S. Office of Special Counsel - an independent agency that investigates whistleblower complaints and abuses of authority - has asked congress to investigate the Department of Health and Human Services' administration of the country's vaccine program.

" It appears that there may be sufficient evidence to find a substantial likelihood of a subsequent and specific danger to public health caused by the use of Thimerosal/mercury in vaccines because of its inherent toxicity," Special Counsel Scott Bloch said in a letter sent to Congress the day after the Institute of Medicine issued its report.

If congress follows Bloch's recommendation, it will not be the first time lawmakers ponder the Thimerosal and autism connection.

Assemblywoman Fran Pavley, D-Agoura Hills, is sponsoring a bill that would ban Thimerosal from all childhood vaccination by 2006.

" I'm always for precaution as it relates to any potential problems that young children face," said Pavley. "While the science is still out, doesn't it make sense to make all vaccinations Thimerosal free?"

Pavley's bill was endorsed 10-2 June 23 by the state Senate Committee on Health and Human Services.

In April, the Iowa Senate approved a bill that would prohibit anything more than trace amounts of mercury from being used in immunizations beginning in 2006. At least two other states - Missouri and Nebraska - are considering similar bills.

Since Peters filed his first case against the manufacturers of childhood vaccines in 2002, his client list has grown to almost 200 parents who claim Thimerosal is at least partially to blame for the children's autism.

While there is no dollar amount attached to each suit, Peters says, based on the cost of treating the disease and emotional suffering endured by the parents, each family should be eligible for much more than $1 million if Thimerosal is proven to cause autism. Care in residential schools for autistic children can cost up to $100,000 a year, according to the CDC.

Peters compares his efforts to that of attorneys who took on asbestos cases more than 30 years ago. Attorneys and some members of the medical community struggled for decades to show that asbestos is harmful to people's health before winning a large product-liability lawsuit in 1971. Peters says proving a generation of American children are suffering from mercury-tainted vaccinations is meeting similar resistance from the scientific and medical communities.

" It's becoming a battle of the scientists," Peters said.

Special note: Thanks to the SEEDS FAMILY for this wonderful article. It received a lot of notice in the papers and in the autism world!

b) Charismatic Doctor at Vortex of Vaccine Dispute

Experts Argue Over Findings, but Specialist Sees Possible MMR Link to Autism

By Glenn Frankel Washington Post Foreign Service Sunday, July 11, 2004; Page A01
http://www.washingtonpost.com/wp-dyn/articles/A41450-2004Jul10.html

LONDON -- The first lesson a doctor needs to learn, says Andrew Wakefield, is to listen to his patients. And so when Rosemary Kessick brought in her son William in 1996, Wakefield listened carefully.

She described how William had deteriorated at age 15 months from a healthy developing toddler into a withdrawn, incommunicative child who screamed throughout the night, and how his bowels seemed on fire with constant diarrhea and pain. All of this had started, she said, within days after William received the MMR -- an injection known here as the "triple jab," designed to vaccinate youngsters against measles, mumps and rubella.

In the end Wakefield, a specialist in intestinal disease, did more than just listen. Working with colleagues, he came up with the hypothesis that William and other victims were suffering from a unique form of intestinal disorder related to their autism that might have been triggered by the MMR. He also claimed that the vaccine might be one reason for the soaring rates of autism in the developed world over the past two decades.

Public health officials insist he is wrong. While Wakefield continues publishing reports supporting his theory, study after study has failed to find a link between autism and MMR, and large numbers of doctors question his work.

But many parents have rallied to his side; vaccination rates in Britain have fallen steeply, and measles rates have begun to climb. Feeling hounded from his job in Britain, Wakefield is finding a new and receptive audience in the United States, where for now, at least, MMR vaccination rates remain stable. For parents and for much of the media, he has become a familiar archetype: the courageous lone crusader for truth and justice up against an uncaring, faceless medical establishment and a greedy pharmaceutical industry.

Now his credibility has taken another blow, from a Sunday Times newspaper report that Wakefield failed to disclose that his work had been supported by funds from a group of parents filing a lawsuit against the vaccine companies. Wakefield has vehemently denied any conflict of interest, but the editor of the Lancet, a distinguished medical journal, now says he would not have published Wakefield's groundbreaking 1998 report had he known about the funding.

Ten of the 13 physicians involved in the original report have withdrawn their support, and the cabinet secretary in charge of Britain's national health service has called for an investigation.

The Wakefield story is about public health and risk and the abiding mistrust that many people hold toward government officials, especially when it comes to issues of health and safety. It is also about how the media can transform complex matters of public policy into simple narratives with heroes and villains. And it is about one charismatic doctor who contends he holds the key to unlocking a medical mystery and that many of his colleagues are either too craven or too frightened to seek the truth.

A Study Is Launched

Tall, square-jawed and soft-spoken, Wakefield, now 47, was once a golden boy in the medical world. He trained at St. Mary's Hospital in London as a gastrointestinal surgeon, then spent several years doing research in Toronto, where he helped develop a novel theory on the causes of intestinal disease. By the early 1990s he was back in London, directing the inflammatory bowel disease study group at the Royal Free Hospital, one of Britain's premier teaching and research facilities.

Richard Horton, a former colleague who now edits the Lancet, once described him as "committed, engaging and charismatic. He asks big questions about diseases, and his ambition often brings quick and impressive results."

By the time Kessick came to see Wakefield with her son William, he had already begun to theorize about a link between the rising numbers of children with Crohn's disease, an inflammatory intestinal disorder, and the introduction of the MMR vaccine a few years earlier. William's case, Wakefield says, helped convince him that there could be a connection between the vaccine and autism as well.

Frustrated to the point of rage by what she saw as a general lack of understanding in the medical profession, Kessick had schooled herself in the disorder. She discovered that autism comes in many shapes and sizes, but its most general characteristic is profound isolation -- an autism sufferer cannot communicate with or understand others. Some children seem to suffer from autism at birth, while in others it develops in the first few years of life.

Kessick also learned that autism rates were rapidly rising -- although there is no agreement on exactly how fast or why. Many experts argue that improved diagnosis and deeper awareness among professionals have led to more accurate and earlier identification of the problem. Others contend that the absolute number of cases is rising, not just medicine's ability to find them. In their view, something in the environment must be to blame.

Based upon William's nightmarish decline, Kessick was certain that the MMR vaccine was at least one of the environmental factors. Most of the doctors she saw dismissed her as an obsessed and guilt-stricken mother looking for an answer to an unsolvable mystery. "Most of them were like, 'Oh, don't worry your little head about the MMR,'" she recalled.

Wakefield ran a battery of tests on William and concluded that Kessick might well be right about the MMR. He persuaded his colleagues at the Royal Free to launch a study of William and 11 other autistic children with similar disorders.

They published their findings in the Lancet in February 1998. In the article, they noted that most of the parents claimed their children's development had regressed within days or weeks of receiving the triple jab. The study itself drew no conclusion except that further investigation was needed. Still, Horton, the editor, was sufficiently uncertain about the findings that he commissioned a critical commentary that ran in the same issue.

But at a press conference announcing the report, Wakefield went a major step beyond what the study said. Asked about the MMR, he told reporters there was "sufficient concern in my own mind" that he would recommend children only receive individual vaccine injections -- not triple jabs -- until the matter was resolved.

One of his colleagues on the paper, pediatric gastroenterologist Simon Murch, immediately jumped in to insist that Wakefield was mistaken. "If this precipitates a scare and immunization rates go down," Murch warned, "as sure as night follows day, measles will return and children will die."

Murch proved to be right. Wakefield's remarks were highlighted in front-page headlines here the next day. The British public, which has grown increasingly suspicious of the medical establishment and the government after outbreaks of mad cow and foot-and-mouth disease, took notice.

By 2003 the MMR vaccination rate had fallen to 79 percent -- well below the 95 percent level experts say is needed to eradicate measles in the general population. Last year, British health officials reported 442 cases of measles, more than three times the number in 1996.

Career Turning Point

Wakefield went on to publish a series of papers seeking to reinforce his thesis and saying that he and other researchers had discovered measles viruses in the bowels of autism victims. In 2001 he co-authored a paper called "Through a Glass Darkly" contending that the MMR vaccine had been introduced without thorough safety tests.

But other researchers were failing to reproduce his results and various epidemiological studies of large, controlled populations failed to uncover a link between MMR and autism. The Institute of Medicine in Washington, part of the National Academy of Sciences, has compiled 14 large-scale studies in the United States, Canada and Europe that all exonerate the vaccine. Wakefield suggests each study has been flawed either because of its methodology or because its authors massaged the findings to get the answers they sought.

David Salisbury, head of Britain's national immunization program, said he understands why Wakefield's views gained traction with the public. "Unfortunately we have a long tradition of vaccine scares in this country," he said in an interview, "and people no longer accept the rather patronizing 'Do as I say because I'm the doctor.'"

Still, says Salisbury, the MMR has passed every test. "It's now been looked at by studies from numerous industrialized countries conducted in many different ways and they all come to the same conclusion -- we can find no evidence of an MMR-autism link," he said.

Britain's health service has refused to provide the more expensive single jabs Wakefield had recommended, arguing there was no reason to believe single vaccines would be less likely to cause an adverse reaction than the triple jab, and that by dragging out vaccinations over two years, fewer children would get the full series and many would be left exposed for longer periods. Those who want single jabs must go to private doctors and pay up to $300 per shot, whereas the MMR is free.

Sometimes the authorities have been heavy-handed. Some children whose parents refused to have them vaccinated have been struck off patients' lists at local clinics. When one local general practitioner started offering patients single jabs, the authorities hauled him before the General Medical Council and threatened to take away his license. The council dismissed the case.

Last fall the quasi-official Legal Services Commission pulled the plug on funding the legal case of Kessick and nearly 1,000 other plaintiffs on grounds the case was likely to fail. After spending about $26 million on research and other preparation, the commission declared, "There remains no acceptance within the worldwide medical authorities that MMR causes the symptoms seen in the children involved in this action."

Wakefield said his funding and responsibilities were curtailed to the point that in 2001 he left the Royal Free. He now gets most of his funding from Visceral, a nonprofit research group he set up in 1994.

" This is where one's career starts to go downhill," he said in a recent interview. "It's one thing to describe a new disease. But this is a case where the medical profession was wrong and the parents were right. What was I supposed to say when the parents pointed to the MMR -- 'Look, I'm terribly sorry but that's inconvenient so please go find another doctor'? "

But while Wakefield's credibility with his medical colleagues plummeted, his popularity with parents and the media continued to rise. The medical writer for the Sunday Telegraph newspaper won a British Press Award in 2002 for her coverage of Wakefield's work. Each positive story about him was promptly posted on the growing network of web sites of autism support groups.]

" The media kept presenting this as a 50-50 proposition, claiming that the medical community was split down the middle on the MMR, when in fact almost all the science was on one side," said Fiona Fox, director of the Science Media Centre, which works with journalists reporting on science-related stories. "I think the public were ill-served by the media in this debate."

The government's case was not helped when Prime Minister Tony Blair, citing privacy considerations, refused to reveal whether his own son Leo, born in 2000, had received the triple jab. Blair insisted that the vaccine was safe, but parents continued to shy away.

Last December Britain's Channel Five television aired "Hear the Silence," a 90-minute docudrama that depicted the harrowing experiences of Kessick and other parents of autistic children and celebrated Wakefield's campaign on their behalf. The network organized a discussion program afterward and invited representatives from both sides to appear. Public health officials pulled out at the last minute, arguing that a debate would only lend credibility to the anti-MMR side. "We felt we'd be giving respectability to a program that was not respectable," Salisbury said.

The pullout left a handful of non-experts to make the pro-MMR argument, led by Michael Fitzpatrick, a general practitioner whose son is autistic. He says he got involved in the controversy after the mother of an autistic child told him she blamed herself for allowing her child to receive the triple jab. "What really annoyed me was Andy Wakefield setting himself up as spokesman for the parents when in fact what he was doing was visiting guilt upon many parents," said Fitzpatrick, who has just published a book, "MMR and Autism: What Parents Need to Know."

" People are anxious, they're frightened and so it's easy for many to adopt the default position and do nothing," Fitzpatrick said.

This is exactly how one mother reacted. Michelle Ellis, who was invited to listen to the arguments at the discussion program, said afterward she respected the case of the pro-MMR team but was still not willing to vaccinate her two young sons. "Statistics don't work for me here," she said.

The broadcast in many ways marked the apex of Wakefield's popularity. But while one part of the media was building him up, another was preparing to pull him down.

Last November a Sunday Times journalist who identified himself as Brian Lawrence paid a visit to Kessick's home north of London. He spent nearly six hours questioning her about William's autism, Wakefield and the entire MMR controversy. Afterward, she said, she felt like she had been grilled like a witness under cross-examination. She said that Lawrence didn't seem to believe anything she told him.

Her suspicion was not far off. "Brian Lawrence" was actually Brian Deer, a prize-winning investigative journalist with a reputation for breaking stories about the pharmaceutical industry. Deer said he used a false name -- Lawrence is actually his middle name -- because he didn't want Kessick to check his web site and find out that one of his specialties was tracking down false claims of damage from vaccines.

Parents' Court Case Suspended

Deer said he had planned to attend the trial of a major MMR lawsuit due to begin in April. When it was suspended indefinitely, he decided to launch his own probe. He found Kessick, like many of the plaintiffs, to be sympathetic people but less than reliable witnesses. He concluded that they wanted to believe MMR had caused their children's autism and that they may have bent the truth to prove it.

" I took her through her evidence as she would be asked in court," he recalls. After about several hours, he says, he told her she and the other plaintiffs could never win their case.

Wading into the huge volume of records in the case, Deer discovered something Wakefield had neglected to tell the Lancet: that the Royal Free Hospital had received some $90,000 in funding from the plaintiffs for Wakefield's help in doing a study of 10 of the victims. Four of the plaintiffs, including William Kessick, were among the dozen patients included in the Lancet article.

Rather than showing up at the Royal Free as consecutive referrals from disinterested general practitioners, Deer alleged, the Lancet 12 had been carefully chosen to prove Wakefield's theory and help lend credence to the lawsuit.

Wakefield insisted he had done nothing wrong -- that the Lancet study and the legal case had been kept entirely separate. But Lancet editor Horton said his former colleague should have disclosed the potential conflict before the original study was published. "If we had known the conflict of interest Dr. Wakefield had in this work, in my judgment it would have been rejected," Horton told the BBC.

A few weeks later, 10 of the 13 doctors on the original study issued a "Retraction of an interpretation" in which they declared that "no causal link was established between MMR vaccine and autism." Wakefield refused to sign.

The retraction was "absolute nonsense, just spin," he says. "There's absolutely no doubt they've been under huge pressure and it's very sad. We did discuss this in detail and I said, 'Guys, I can't sign up to this'."

Wakefield lost other allies as well. John O'Leary, an Irish microbiologist who has been one of his key collaborators, pronounced himself "shocked and disappointed" that Wakefield had not declared the potential conflict.

But Wakefield's core supporters, such as Rosemary Kessick, continue to believe in him. Robert Sawyer, chief executive of Visceral, Wakefield's research group, says donations are still coming in. But he expects to move Wakefield's research unit to Texas over the next few years. The United States, with its privatized health care system and entrepreneurial spirit is much more fertile ground than Britain for a medical pioneer like Wakefield, Sawyer said.

© 2004 The Washington Post Company


5. TACA 2005 Planning Meeting & Mentor Training
Calling all mentors and super TACA families!

It is time for our annual meeting where we:

a) Provide training on HOW TO BE a new parent mentor
- NOTE: This is training for parents to become mentors to help new families. Not everyone has the time, but if you do please consider joining TACA’s super parent mentor group! Currently we have almost 60 parent mentors – but more mentors are needed!
b) Do planning and brainstorming for next years activities
- This part of the meeting will focus on what TACA currently provides in services to families in Southern California and brainstorm activities for 2005. The brainstorming will focus on improving existing services, possible new services and priority, and finally raising money to support these efforts.

We would like you to attend this special event coming up in September. Please be sure to RSVP!

Here are the details:

Date: September 14, 2004
Time: 6:30 pm – 8:30pm
Place: Skosh Monahan’s in Costa Mesa
Address: 2000 Newport Blvd, Costa Mesa, CA 92627
Phone: (949) 548-0099
Note: appetizers (including several from the GFCF menu) and non-alcoholic drinks will be provided. Special thanks to Gary at Skosh for helping make this event happen!
If you would like more information OR TO RSVP, please email me

6. TACA ANNOUNCES: New Parent Seminar Series! Newly Scheduled

Date:  Saturday, October 30, 2004

Goals of the Seminar:

After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day New Parent Orientation is to provide parents and caretakers the “jump start” they need at the beginning of their journey from parents who have “been there, done that.” In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.

Note: Seminars will be available via TACA on a quarterly basis.

Who should Attend?

This one-day seminar is geared for parents and caretakers of children affected by autism in Southern California. Content will be provided in an “overview” presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 6 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.

Seminar Agenda

1. Introductions & review of the agenda
2. What’s in a diagnosis?
3. Surviving the first year
4. Who pays for WHAT?!!
5. Biomedical (necessary tests and protocols)
6. Therapies (including: behavioral, academic, play therapies, social skills, speech & more!)
7. Dietary Interventions
8. Legal issues
9. Organization & Planning 101
10. Questions and Answers
Seminar Time:             9:30am – 4:00pm (refreshments and light lunch to be served)
Seminar Location:       Location is in Costa Mesa, CA by South Coast Plaza.
                                    Location confirmation and address will be sent once registration payment and information is received.
Seminar Costs:            PARENTS & CARETAKERS:  $20 registration and materials fee required
                                    Non Parents/Professional registration:  $50 registration and materials fee required
How to Register:          Registration fee made payable to TACA
                                    Mail fee to TACA at PO Box 12409, Newport Beach CA 92658-2409
                                    Registrants MUST INCLUDE:  name, email address, and address.
                                    Available spaces are LIMITED! Be sure to RSVP @ least 10 days before the seminar!
Babysitting:                  Sorry, babysitting and child care is NOT available at these seminars.
For more information:  Please contact Lisa Ackerman at contact us or 949-640-4401 or www.tacanow.org
Seminar funding and assistance is provided by TACA (Talk About Curing Autism) – Families helping Families

7. Dr. Jerry Kartzinel Medical Seminar - Audio Tapes or CD’s Now Available
From the June 19th Medical Seminar – CD’s or audio tapes are now available
Seminar includes the latest medical findings and treatments for Autism.
Please make your check out to ICDRC
COSTS:  $25 (includes shipping – available only in the US
Mail to: TACA – Dr Jerry Seminar
PO Box 12409 Newport Beach, CA 92658-2409
BE SURE TO INCLUDE YOUR INFORMATION:
Name
Email address
Mailing Address, City, State, ZIP Code
Phone Number
Format desired:  CD or audio tape
Note:                           
Only part of the question and answer period is available. This is a 4 ½ hour medical presentation including protocol.
Notes from this conference can be found on the TACA web site at: http://www.tacanow.com/notes.htm
Questions??                  Contact us
Who is Dr Jerry?            www.icdrc.org

8. Need more support?  JOIN US AT COFFEE TALK!

Coffee Talk is going to be your hour (or so) once the kids are away at school or busy working in therapy to chat with other families affected by Autism. This is an unstructured, casual meeting environment to chat and talk about what you want to talk about.

Date: Tuesday, August 17th
Time: 9:00 a.m. – 10:30 a.m.
Location: Diedrich Coffee – Costa Mesa
1170 Baker Street (off the 405 freeway and Fairview Street)

NO need to RSVP, just join us for a little coffee, a little talk, no big whoop!


9. Social Events
TACA FAMILY SOCIAL EVENT

Attention all TACA members! Diane Gallant has worked hard with South Coast Plaza in arranging FREE CAROUSEL RIDES for children with Autism and their siblings!!

Come join us for a morning of fun and horse rides at South Coast Plaza!

Upcoming Dates:          Saturday August 28th
Times:                          8:30 am-9:30 am (BEFORE the mall opens)
Local:                          
South Coast Plaza by the carousel (NOT the Crystal Court carousel!)
Costs:                           FREE!!!!!!!!!
Park:                            Park by ZTejas Restaurant and the Bank of America ATM’s off Bristol
Note: Kids can ride as often as they would like and based on availability.
NO NEED TO RSVP!  JUST COME AND PLAY!!

TACA PARENTS-ONLY SOCIAL EVENT

Super TACA Volunteer Mary Romaniec is relocating to the East Coast with her family in late July. WE WILL MISS HER, THE ENERGY AND HER EFFORTS.  To help send her on her way. we will be doing an informal going away party after the July 10th TACA meeting.

Date:                Saturday, July 10th
Time:               
5-8pm
Location:          Habana’s – 2930 Bristol Street, Suite A110 (In the ANTI MALL) Costa Mesa
                        Phone 714-556-0176

Note: This is a pay your own way, informal dinner and drinks, without children.


10. Fundraisers

a. Cure Autism Now Walk at the ANAHEIM POND

ORANGE COUNTY WALK NOW

On Sunday, August 29, the Orange County Chapter of Cure Autism Now (CAN) is hosting their first WALK NOW at the Arrowhead Pond in Anaheim. The proceeds are going to CAN for research to find a cure and cause of autism. There is no fee for the WALK, we just ask for donations supporting the WALK Teams.

Consider walking with your family, your child, your child’s therapists & paraprofessional team. Fun activities such as bouncers, Autism Resource Fair, and meeting families like yours will be there.

You can find the information on the internet at www.walknow.org, and click onto Orange County, or call us at 714-968-4667, or e-mail grandma.jo1015@verizon.net.  You can also contact CAN at 888-826-8476. 

Thanks in advance for your support
Harold and Joanne Davies (Grandma Jo)
WALK NOW Co-Chairs

b. TACA FAMILY PICNIC & FUNDRAISER

Save the date! 

Date: SUNDAY, September 26, 2004 (Note date change!)
Time: 10:00 am to 2:00 pm
Location: Irvine Regional Park – 1 Irvine Park Road Orange, CA 92869
Phone: (714) 973-6835
Web: www.ocparks.com/irvinepark
Costs: $5 per person for all over the age of 3

Activities will include:

-                      Gluten free / casein free BBQ with chicken and beef burgers with buns.
            Other snacks, drinks, sides will also be provided.
-                      Bubbles
-                      Two train bouncers
-                      Face painting
-                      Traditional games
-                      Play with your TACA friends!

Additional activities include (for an additional fee):

-                      Train rides for an additional $2 per person
-                      Zoo $1 per person
-                      Pony Rides $3 per person

HOW TO RSVP?  Check the www.tacanow.org web site main page for details!


11. Upcoming Fee-based Conferences & Seminars
in
Southern California

The Pfeiffer Treatment Center is offering a Free seminar - "Balancing Through Nutrients"
Learn the benefits of Nutrient-Based therapy for chemical imbalances such as ADD/ADHD, Autism, Behavior Disorders, Depression, Anxiety, and Schizophrenia –
Speaker:           William Walsh, PhD, Chief Scientist - HRI Pfeiffer
Please RSVP (TO RECEIVE TIMES)           630-505-0300 ext 216     or         email: pss@hriptc.org
Pfeiffer Treatment Center is a nonprofit medical facility that specializes in the research, education, and nutrient-based treatment of chemical imbalances. Patients come to us for an analysis of their unique chemistry and an individualized nutrient program.
Pfeiffer will be seeing patients in Garden Grove, Aug. 2 - 4
Please call 630-505-0300 for an appointment and TIMES www.hriptc.org
=====
Autism/Asperger's 2004 CEUs for ASHA & APA  - Tony Attwood, Ph.D. offers the second in his Asperger's Workshop series, going in-depth on "Behavior & Anger Management, Challenges of Adolescence, Pre-Teen & Teens, and New Perspectives on Turning Special Interests into Positives." 
8 am - 4:30 pm 
July 31 - San Bernardino
Prof.$135 (group rate Prof $115- Student/Family Member $110 (Fam. group rate $95) Person w/ ASD $75
Please see web site for up-dates.  
Future Horizons 800-489-0727 www.FutureHorizons-autism.com and email: info@FutureHorizons-autism.com
=====

REED MARTIN, JD will be in Southern California for a two-day symposium

Friday and Saturday, August 20-21, 2004

The Claremont Inn Hotel and Conference Center, 555 W. Foothill Blvd., Claremont, CA (Ontario/Pomona area at Indian Hill and Foothill Blvd.)
Reed Martin is an attorney with over 34 years experience in special education law and recognized as one of the nation's leading experts on eligibility, services and procedural safeguards in IDEA, 504, ADA, FERPA, No Child Left Behind and more. Parents and professionals who live, work with, or advocate for young people of all ages who learn and behave differently, including those with Autism, Learning Disabilities, ADHD, emotional problems or other health impairments, are invited to take this opportunity to meet legal expert REED MARTIN and get answers to your questions on laws, advocacy and accommodations using No Child Left Behind, the IDEA, Section 504 and the ADA to Help children with disabilities get a free, appropriate public education, graduate from school and successfully transition from school to adult society.  Saturday only, you can register your teen or young adult for a concurrent, FULL DAY  WORKSHOP for transition age youth, (14-24 years) (Participants must have ability level and interests to participate independently in a full-day program)

For more info: Pomona Valley Learning Disabilities Association

PO Box 1114, Claremont, CA. 91711,  (909) 621-1494, PVLDA@aol.com
 
=====
Soma and Tito Mukhopadhyay and the Rapid Prompting Method (RPM)
Save the Dates! Sept 18 and Oct 14-16 Full-day conference featuring Soma and Tito Mukhopadhyay and the Rapid Prompting Method (RPM) will take place on Sept 18 in San Diego (open to all). Individual RPM workshop sessions with Soma will still take place Oct 14 - 16 with the possibility for a limited number of participants and observers.
These events are sponsored by The San Diego Chapter of the ASA, and HALO. More information and details will be posted by the end of Jun.
Sept 18, San Diego
Chantal Sicile-Kira csicilek@pacbell.net Susan Segal Wood seglfoto@napanet.net 707-255-3686
 
still take place Oct 14 - 16 with the possibility for a limited number of participants and observers.
These events are sponsored by The San Diego Chapter of the ASA, and HALO. More information and details will be posted by the end of Jun.
Sep 18 San Diego Chantal Sicile-Kira csicilek@pacbell.net Susan SegalWood seglfoto@napanet.net 707-255-3686
 
=====
DAN! (Defeat Autism NOW!) CONFERENCE UPDATE:
Fall DAN! Los Angeles, CA - October 1-3
The DAN! Autism Is Treatable Conference - Internationally recognized expert speakers offering physician and nurse training, Parent panels. Westin Hotel. www.danconference.com
NOTE: TACA will have a booth at the DAN! Conference – we will see you there!
______________________________________________________________________

 TASK (Team of Advocates for Special Kids) has some great workshops for a variety of different topics in different locations. Check them out at

TASK WEB SITE FOR MORE DETAILS: http://www.taskca.org/sched/WSSched.htm

Sat., July 31 (8:30-1:00)

BASIC ASSISTIVE TECHNOLOGY

TASK, Anaheim

 

Wed., Aug. 4 (8:30-4:30)

IEP RIGHTS AND STRATEGIES

TASK,
San Diego

 

Thurs., Aug. 12 (8:30-4:30)

TRANSITION TO ADULTHOOD

TASK, Anaheim

 

Fri., Aug. 13 (8:30-4:30)

IEP RIGHTS AND STRATEGIES

San Bernardino

 

Sat., Aug. 14 (8:30-4:30)

MILITARY IEP WORKSHOP

32nd Street.
Naval Base

 

Sat., Aug. 14 (8:30-4:30)

IEP RIGHTS AND STRATEGIES

TASK, Anaheim

 

Sat., Aug. 14 (8:30-12:30)

IEP RIGHTS AND STRATEGIES
Part I

RCOC South,
Mission Viejo

 

Wed., Aug. 18 (8:30-4:30)

ASSISTIVE TECHNOLOGY FOR EARLY LEARNING

TASK, Anaheim

 

Wed., Aug. 18 (6:00-8:00)

IEP TIPS AND POINTERS

RCOC South,
Mission Viejo

 

Sat., Aug. 21 (8:30-1:00)

TRANSITION TO PUBLIC SCHOOL

TASK, Anaheim

 

Tues., Aug. 24 (8:30-4:30)

SECTION 504 ACCOMMODATIONS

TASK, Anaheim

 

Wed., Aug. 25 (8:30-4:30)

IEP RIGHTS AND STRATEGIES

TASK,
San Diego

 

Wed., Aug. 25 (8:30-4:30)

IEP RIGHTS AND STRATEGIES

TASK, Anaheim

 

Sat., Aug. 28 (8:30-4:30)

IEP RIGHTS AND STRATEGIES

TASK, Anaheim

 

Wed., Sept. 2 (8:30-1:00)

BASIC RIGHTS

TASK, Anaheim

 

Thurs., Sept. 3 (8:30-4:30)

TRANSITION TO ADULTHOOD

San Bernardino

 


12. Personal Note
I cannot believe the summer is already half over! With Fast ForWord (for info please see: http://www.scientificlearning.com), summer camp and a home therapy program (including in-home ABA, Speech, Social Skills, and Occupational Therapy) I keep wondering – where is the “break” in the summer break??! But when these thoughts rush to my head, I have to remember it is not me working (yes, I open the door, answer questions, run errands, applaud as needed, and drive Jeff all over Orange County) -- it is JEFF who is working so hard. It amazes me his ability to continue to work at full capacity, in the heat, lots of changes to his typical schedule, new activities and yet complete this all with amazing growth. Even better, all still with that smile on his face. He is truly a blessing and making some wonderful progress. I am so proud of him. I am proud of all of our kids. (NOTE: I will provide an update on Fast ForWord once it is all completed in the near future.)

Speaking of growth - TACA is expanding so rapidly we seem to be adding anywhere from 10-40 families to the group every month. The State of California says the numbers are going down, but TACA is still growing. I cannot believe we are over 1,100 families and counting. I hope that we will see a slow down in the newly diagnosed we seem to be experiencing … soon.

After some preliminary research, I have yet to find another support/education group in the U.S. like TACA (in size and services) that does not CHARGE a membership fee and does what we do for families affected by autism. While not all our efforts are free, about 90% of what TACA provides is free to families. This is where you come in – we need your help. To sustain our efforts with the growth in the number of families affected by autism, please consider attending the TACA picnic on September 26th (more information is available under section 9 of this newsletter and from the www.tacanow.com web site.) The biggest area of help would be if dozens of our TACA families could locate a corporate sponsor, private or public foundation, or individual donors to help sponsor this wonderful social event and our annual efforts. I would like to continue TACA’s efforts and grow them to areas of need – but I cannot do this alone. If you have a suggestion or would like to locate outside help for TACA, please contact us. Thanks for your help! And keep up the great work!

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

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.

P.S. TACA e-news is now sent to 1,256 people!
(This number represents families – 95%, and the rest are professionals.)