E-News May 2005

Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for May 2005 - #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. Upcoming TACA Costa Mesa schedule & other TACA meeting schedule info: June - September 2005 meeting schedule.
    PLEASE NOTE: WE HAVE GREATLY EXPANDED OUR TACA COSTA MESA MEETING DATES & OFFERINGS!
    WE ARE VERY EXCITED ABOUT THE UPCOMING SPEAKERS! Please check out the variety of meeting dates, times & speakers!
  2. TACA announces the Friends & Family Campaign
  3. General News:
  4. Vaccine News
  5. Fun Activities
  6. Attention TACA SAN DIEGO MEMBERS
  7. New Books & Web Resources
  8. Upcoming Conferences & Seminars
  9. Personal note

1. Upcoming TACA Costa Mesa Meeting Schedule

  All meetings At The Vineyard:
  102 E. Baker
  Costa Mesa, CA
  CLICK HERE TO FIND A MEETING

     
Saturday, June 11, 2005: Health Insurance Reimbursement Tips & Tricks (Topic / date change)
 
  • Presented by: TBD

  • Time: 1:00 pm- 4:00 pm

  • Fee: Free – no RSVP required

  • Location : Vineyard Newport Church, 102 E. Baker Costa Mesa

 
Saturday, June 25, 2005: Dr Jerry Kartzinel – The Latest in Biomedical Treatments for ASD
 

Our annual fundraiser for hosting Dr. Jerry for TACA families is here! Be a part of this special presentation and hear the latest in biomedical research.

  • Presented by: Dr Jerry Kartzinel - www.icdrc.org

  • Time: 10:00am- 4:00 pm (lunch on your own)

  • Fee: RSVP REQUIRED - $28 per person / $45 per couple

  • Registration: TACA now offers registration for these PAY FOR events online at: http://www.tacanow.com/shop.htm

  • Location: Vineyard Newport Church 102 E. Baker Costa Mesa

 
Saturday, July 9, 2005: Social Skills & Autism (Topic / date change)
 

This presentation be provided in two parts. Part one will start with a general overview on social skills with all attendees. Part two will divide the audience into 2 groups: Group 1 – higher functioning & verbal spectrum kids ages 6+. Group 2 – younger spectrum kids <6 years and all non-verbal spectrum children.

  • Presented by: Autism Spectrum Consultants – Jessica Postil & Staff

  • Time: 1:00 pm- 4:00 pm

  • Fee: Free – no RSVP required

  • Location: Vineyard Newport Church 102 E. Baker Costa Mesa

 
Saturday, August 13, 2005: SUPER SATURDAY! TWO MEETINGS / TWO LOCATIONS TO CHOOSE FROM!
   

Parent Open discussions – for support and sharing info – moderated by Diane Gallant

  • Time: 1:00 pm- 4:00 pm
  • Fee: Free – no RSVP required
  • Location: Vineyard Newport Church 102 E. Baker Costa Mesa

Gluten Free / Casein Free COOKING CLASS & Education – by Lisa Ackerman

  • Time: 2:00 pm- 5:00 pm
  • Fee: $25 per person / $40 per couple - RSVP required
  • RSVP off the TACA web site or via mail
    Please be sure to include: name, address, email & phone #. NO walk ins can be accepted.
  • Location: Sur La Table, 832 Avocado Ave, Newport Beach, CA 92660
  • TACA now offers registration for these PAY FOR events online at: http://www.tacanow.com/shop.htm
 
Saturday, September 10, 2005: Dr Christine Majors – Child Neuro-psychologists
 

Why perform standardize testing. Why perform outside evaluations? Why are they important? - Where should you start? How should you continue?

  • Time: 1:00 pm- 4:00 pm

  • Fee: Free – no RSVP required

  • Location: Vineyard Newport Church 102 E. Baker Costa Mesa

 
Sunday, September 25, 2005: TACA’s 2nd Annual Picnic & Fundraiser
 
 

(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.)

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.

And remember, we are still a non-faith based group!


TACA Has 7 Southern California Meeting Locations:
     
1.
Costa Mesa: 
2nd Saturday of each month (info in item #1 for meeting topics and details)
CLICK HERE TO FIND A MEETING
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

  • June 5 - Who pays for What/Managing Your Child's Records - Moira Giammatteo & Cathy Beier

  • July 10 - (DATE CHANGE DUE TO HOLIDAY) - Sarit Ariam - Special Ed Attorney
    IDEA Changes: How they Affect You - How to Navigate the New Maze of Special Education and Still Get the Services Your Child Needs

  • August 7 - Safety and Autism - Moira Giammatteo

  • Sept 11 - (DATE CHANGE DUE TO HOLIDAY) - Mainstreaming/Inclusion - Cathy Beier

3. San Diego:

4th Tuesday evening – 6:30- 8:00 p.m. - info: Becky Estepp
NEW LOCATION AS OF April 2005: Rancho Bernardo Community Presbyterian Church
17010 Pomerado Road, San Diego, CA 92128 - Rooms 22 A&B

  • May 24, - Dr. Devin Houston--Enzyme therapy
  • June 28 - Author Christina Adams offers TACA members a look at her new book “A Real Boy: A True Story of Autism, Early Intervention and Recovery”
    (Berkley/Penguin, May 2005). She discusses the struggles and joys of the recovery process, how her son passed a kindergarten-readiness test with no sign of autism detected, and how a new doctor refused to believe he’d ever been diagnosed.
    Christina Adams is the author of A Real Boy: A True Story of Autism, Early Intervention and Recovery (Berkley Books, May 2005) and a commentator for National Public Radio’s Day to Day. Her work has appeared in the Los Angeles Times Magazine, The Los Angeles Times, Brain Child Magazine, Alligator Juniper, Kaleidoscope and Appalachian Heritage, among others. She hosts a show on the Autism One internet radio network.
    Medical publications she has edited include “The Cornerstone Method: IQ Rise Found in Treated PDD children” with author and psychiatrist Dr. Gilbert Kliman.
    Christina served as editor of The Pentagram (the newspaper of the Pentagon), and worked in communications and public relations for the federal government and aerospace and insurance industries. After she obtained a Master of Fine Arts (Creative Writing) degree in 2000, her son was diagnosed with autism. She assembled and ran a cutting-edge educational and biomedical treatment program for him, as described in A Real Boy. He is now in a regular school, has friends and tests above age level in speech and I.Q.
    Order now on www.amazon.com. Or visit Christina Adams’ website at www.christinaadamswriter.com
  • July 26 - Amy Langerman, "Lawyer vs. Advocate -- A duel to the finish" 
  • August - no meeting
  • Sept. 27 - Chelation and alternative detoxification methods for ASD children
    Chelation is often a controversial but recommended treatment plan for ASD children who are tested as metals toxic. For as many reports which cite chelation as an alternative practice, Autism Research Institute (ARI) cites chelation to be by far the most recommended biomedical treatment protocol by thousands of parents surveyed this past year. Several recent studies have also outlined that many ASD children have a defect in removing toxic metals from their bodies and should consider treatments that help boost and enable detox. This presentation will review many of the commonly prescribed and natural chelation remedies available today. (This will include: DMPS, DMSA, ALA, Glutathione, and other over the counter supplements used today for chelation and detox.)
    Presented by: Dr. Kurt Woeller – Stillpoint Health www.biohealthcenters.com
    Dr. Woeller is a DAN! (Defeat Autism Now!) Doctor since 1999.
  • October 25 - Siri Andrews --Social Stories for Autism Spectrum Disorders
  • November 29 - Speaker to be announced
  • December - no meeting
4. Corona:

3rd Saturday – 1:30–4:30 p.m. NEW LOCATION AS OF 2/1/2005 : Autism Behavior Consultants - 1880 Town & Country Road Building B-101, Norco, CA 92860. Located off the 15 Freeway (Take 2 nd street or 6 th street exit) off Hamner. For more information, please contact us

  • May 21 Two Speakers:
    - Jack H. Anthony, Special Ed Attorney, on Special Education Law & Your Family
    - Author Christina Adams offers TACA members a look at her new book A Real Boy: A True Story of Autism, Early Intervention and Recovery (Berkley/Penguin, May 2005). She discusses the struggles and joys of the recovery process, how her son passed a kindergarten-readiness test with no sign of autism detected, and how a new doctor refused to believe he’d ever been diagnosed (see biography on Christina in section 2).

  • June 18 Testing & Assessments – by Dr. Christine Majors
    Dr. Majors is a Child Neuropsychologist specializing in autism and other disabilities. Her important discussion will review: What is in a test and outside evaluations? Why are they important? Where should you start? And important observations about district and regional center testing.

5. Torrance: 3rd Monday of each month at Whole Foods Market on PCH in Torrance – 6:30 - 9:00 p.m. For more info: Beth Mulholland
SPECIAL NOTE: This group tends to be an advanced group with biomedical discussions. If you are a newly diagnosed family, you may wish to attend other locations for your first meeting.
6. Visalia:

3rd Wednesday of month
Time: 6 p.m. "Happy Hour" with GFCF snacks and coffee 6:30-8:30 p.m. Speaker
Location: Kaweah Delta Multi-Service Center Auditorium, 402 W. Acequia, Visalia
Information: Please contact Lynne Arnold

  • Wednesday, June 15, 2005
    Sensory Integration - Jennifer L. Hoffiz, of Pleasanton¹s Sensory Integration Center
  • Wednesday, July 20, 2005
    Working with the Regional Center: Your Rights Under the Lanterman Act - Enid Perez, Attorney; Kay Spencer, Advocate, of the Office of Client Rights.
7. Santa Rosa:

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

Speakers:

  • July - Julie Griffith, Neurologist DAN! Doctor
  • August - Devin Houston, Ph.D. HNI
  • December - Lisa Ackerman (we hope!)

2) STATUS On the TACA “FAMILY & FRIENDS” campaign:

A HEART FELT THANK YOU for everyone who is participating and helping with the TACA Friends and Family campaign. It has been two months since we announced this important awareness and fundraising campaign. We are over halfway through and halfway to our goal with monies received and commitments made!

Here is an update for the TACA Friends & Families campaign:

To date we have:

  • 77 families participating
  • 15 Families have their full or partial campaign efforts already in to TACA

Valdez Family

 

$5,000

Yorks Family

 

$5,000

O'Connor Family

 

$1,635

Spicer Family

 

$1,200

Barboza Family

 

$983

Riley Family

 

$471

Brodie Family

 

$335

Johnson Family

 

$260

Contino Family

 

$200

Kersey Family

 

$200

Na Family

 

$200

Palreddy Family

 

$150

Oishi Family

 

$150

Lyons Family

 

$150

Monahan Family

 

$140

Zielinski Family

 

$135

 

 

 

 

Total Family Campaign:

$ 16,209

 

Money In (Bracelets )

$ 661

 

Online Donations:

$ 200

 

TOTAL DONATIONS IN:

$ 17,070

 

Family Campaign Goal:

$50,000

 

GOAL TO GO

$(32,931)

 

Total Commitments:

$ 14,653

 

GOAL TO GO

$(18,278)

(If your family is listed incorrectly or you wish to verify donations – please contact us! THANK YOU!)

The minimum commitments listed above are the minimum goal amounts for each participant who picked up or requested a “red” TACA Friends & Family envelope.

Remember: We will be having a Friends & Family celebration party at Skosh Monahan’s in Costa Mesa this July. We are looking forward to acknowledging and rewarding TACA Friends & Family participants!

It is recommended that you can send all the donations in the single envelope to TACA once donations are collected. If this is not possible and your friends and family are sending checks directly to TACA – please have them send the donation in your family’s honor.  If you have any questions regarding named potential donors and their donation – please drop me a note. I will be happy to let you know when these donations come in!

We still need your help! If you can, please help make your circle of friends and family aware about autism and help support TACA’s efforts. If you need an additional wish to participate and receive fundraising package or additional blue Autism bracelets – please let me know! Read all the details.

The campaign ends on June 30, 2005. Please help us wrap this campaign with a bang!!

TACA now offers online donations for this campaign at: http://www.tacanow.com/shop.htm.

As always – A BIG THANK YOU FOR YOUR IMPORTANT EFFORTS IN FUNDRAISING AND RAISING AUTISM AWARENESS! Please let me know if you have any questions or need any help.

All my best,

Lisa A Jeff’s (and Lauren’s) Mom


3) General News

Article A: Bono's new bill would bolster autism fight

$500 million: The legislation would fund early diagnosis and intervention programs.
By CLAIRE VITUCCI / Washington Bureau

Combating Autism Act

Legislation introduced by Rep. Mary Bono would authorize $110 million a year for five years to combat autism through research, early screening and education efforts.

WASHINGTON - More than $500 million in federal money would be spent to combat a skyrocketing number of autism cases in California and nationwide under legislation introduced by Inland Rep. Mary Bono.

The Combating Autism Act of 2005 would authorize $110 million each year for five years to fund grant programs for states to develop autism screening, early diagnosis and intervention programs for children.

"I feel it's very important -- it's something that we can find a fix for if we coordinate our efforts," said Bono, R-Palm Springs, who introduced the legislation this week.

The bill would also continue to fund research by the Centers for Disease Control and Prevention and reauthorize the Autism Coordinating Committee, which coordinates efforts concerning autism within the Department of Health and Human Services.

A similar bill has been introduced in the U.S. Senate.

Dr. Ron Huff, a psychologist for the state Department of Developmental Services, said California, like other states, has seen an increase in the number of people requesting services for autism.

As of March, more than 27,000 people with autism were receiving services from the state, according to department statistics. That's a 435 percent increase since 1994. In the Inland area, some 2,100 people were requesting services -- a 648 percent increase since 1995.

Funding is needed to train people who care for young children, from teachers and school resource specialists to day-care providers and speech and language therapists, in how to deal with autism, Huff said.

In recent years, pediatricians have begun screening children for developmental disabilities as they do for hearing and sight problems. But more could be done, Huff said.

"There still is a great need for money to orient those persons who come in contact with young children," he said.

More funding is sorely needed to help provide services for autistic children and their families, said Cheryl Hunter, of Yucaipa, whose 11-year-old son has autism.

But she said the money should be spent to help those who are already in need rather than looking for a cure to autism.

"They should be looking to focus on the children who are already here with the disability, to enhance their ability to understand their environment and their ability to relate socially and learn at their own pace," Hunter said, "and in training educators and parents in trying to help them along."

Research shows that the sooner autism is diagnosed and the sooner children and their families have access to services, the better their quality of life will be, said Stan Swartz, a Cal State San Bernardino professor of special education. But older children with autism need services, too.

"We need to be mindful of children who are older and those approaching young adulthood," Swartz said.

"Those are two important groups. We can't forget about them."

Reach Claire Vitucci at (202) 661-8422 or cvitucci@pe.com


Article B: Brain food for autism

By: Ivanhoe Newswire

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Frightening but real statistics about one of the fastest growing disorders to strike American children.

Autism affects one in every 166 children. It's the most common childhood developmental disorder.

Now, changing your autistic child's diet could change his life forever.

These are the faces of autism.

Young boys and girls stuck in a world all their own. A world Lin Schwarzkopf has come face to face with.

Three-year-old Trevor was born with autism. It's a developmental disorder that's difficult to treat. Lucky for Lin, she ended up in the right doctor's office.

Dr. Lewis Mehl-Madrona, who received his medical degree from Stanford, has worked with autistic children for decades, not only using traditional medicine, but also trying alternative approaches.

His treatment for Trevor wasn't a drug, he changed his diet.

Schwarzkopf said, "Trevor's been on a wheat-free, gluten-free, organic diet."

And it's working.

"I could see that he was responding," Schwarzkopf added.


When Trevor stopped eating gluten, found in wheat products, and casein, found in milk, he started walking and talking.

Dr. Mehl-Madrona explained, “I really don't know how to explain that, but it's common when you eliminate these particular substances from the diet."

One theory is that foods containing wheat and milk may actually work as a narcotic and cause some of the behaviors of autism.

"Really the most frustrating thing about working with autism is, for the most part, we don't have a clue what to do. We just have to try different things," Dr. Mehl-Madrona stated.

Susan Haubrock is trying a different approach for her daughter. A video of Reanne when she was four. She refused to wear clothes and was just starting to talk.

Then Susan started Reanne on vitamin therapy.

Susan said, "We were on the vitamins for maybe two weeks and we noticed all the sudden she started cooing."

Dr. Mehl-Madrona said vitamins B12, B6, folic acid, omega3 fatty acids and magnesium have all shown a strong effect on autism.

"When you super-saturate the brain with nutrition, you can override some defects," Dr. Mehl-Madrona added.

Reanne is seven-years-old, home-schooled and learning her three R's.

Dr. Mehl-Madrona admits this therapy does not work for everyone. Many studies have shown the benefits of these nutrients.

In fact, 18 studies that have looked at vitamin B6 for autism have all shown positive results.


Article C: May Revision to the California Department of Developmental Services

2004-05 - $81.4 million

2005-06 - $61.1 million

Developmental Centers

Current Year

The May Revision includes a net reduction of $2.1 million ($625,000 General Fund) for Developmental Centers. This net change is due primarily to the following adjustments:

 Population - Population in the Developmental Centers is projected to decrease by 105 residents from the level in the Governor's Budget, resulting in $8.4 million ($4.9 million General Fund) savings and a reduction of 119.0 positions.

 Redirection of Population Savings - Population savings of $4.7 million ($2.7 million General Fund) are redirected to fund baseline employee compensation costs and other nondiscretionary costs that exceed available funding. This includes $1.9 million for employee compensation, $800,000 for payment of two legal settlements, $430,000 for janitorial contract costs at a higher blended rate established by the Department of Personnel Administration, and $1.6 million for utilities.

Budget Year

The May Revision includes a net increase of $9.4 million ($6.1 million General Fund) for Developmental Centers. Major changes include:

 Population - Population in the Developmental Centers is anticipated to decrease by 55 residents from the Governor's Budget level, resulting in $6.1 million ($3.6 million General Fund) savings and a reduction of 93.0 positions.

Expenditures: Health & Human Services

May Revision 2005-06 GOVERNOR'S BUDGET

 Agnews Staffing Restoration - Restoration of 43.0 non-Level-of-Care positions and $3.2 million ($1.7 million General Fund) that was reduced in the Governor's Budget in the standard budgeting adjustment for population decline. These resources are essential to ensure adequate staffing of Agnews Developmental Center during the transition to closure.

 Workers' Compensation - An increase of $4.9 million ($2.8 million General Fund) to settle select workers' compensation claims and reduce ongoing liabilities.

 Quality Management - An increase of $664,000 ($369,000 General Fund) for five positions to assist in a comprehensive review of quality management practices in the Developmental Centers pursuant to federal requirements.

Regional Centers

Current Year

Compared to the Governor's Budget, the Regional Centers community caseload is projected to decrease by 1,900 consumers, to an updated caseload of 197,355 consumers. The May Revision includes a net decrease of $62.5 million ($69.6 million General Fund) for Regional Centers as a result of the following adjustments:

 Operations - An overall reduction of $13.5 million ($14.7 million General Fund) for Regional Centers operations reflecting legislative denial of a proposed $10.6 million augmentation for improving Regional Centers case management ratios and a decrease of $3.0 million due to updated caseload.

 Purchase-of-Services - An overall reduction of $49.0 million ($54.9 million General Fund) for Regional Centers purchase-of-services due to updated caseload, utilization, and expenditure data and costs for community placement plan and placement continuation. Temporary cost containment strategies, such as rate freezes, unallocated reductions, and other measures, have slowed the annual rate of program growth.

Budget Year

Compared to the Governor's Budget, the Regional Centers community caseload is projected to decrease by 2,865 consumers, to an updated caseload of 205,155 consumers. The May Revision includes a net decrease of $31.0 million ($78.5 million General Fund) as a result of the following changes:

 Operations - An overall increase of $17.7 million ($4.9 million General Fund) for Regional Centers operations. This net change reflects several adjustments:

* California Developmental Disabilities Information System (CADDIS) - $2 million is set-aside for proposed functional changes to CADDIS with expenditure contingent upon Department of Finance (Finance) approval. Further changes to CADDIS are on hold pending an independent assessment of the project conducted in the current year under the oversight

Expenditures: Health & Human Services of Finance, and the California Health and Human Services Agency. This assessment will determine if the current CADDIS design reflects the project objectives as represented in the original project Feasibility Study Report and Request for Proposal. The review will also consider whether CADDIS will meet Department of Developmental Services (DDS) and Regional Centers business practice requirements and objectives, including objectives related to federal compliance.

* Compliance with Home and Community-Based Services Waiver - A net increase of $9.7 million (decrease of $1.8 million General Fund) for Regional Centers to meet federally required case management ratios. This increase is due to increased federal financial participation for the proposed new regional center positions.

* An increase of $189,000 due to updated caseload data. ¡ Purchase-of-Services - An overall decrease of $47.9 million due to updated caseload, utilization, and expenditure data and costs for community placement plan and placement continuation. Cost containment strategies are continued in the budget year to slow the rate of program growth to sustainable levels.

Agnews Developmental Center Closure

There is a reappropriation of $11.1 million General Fund from the current year to the budget year for development of community-based housing related to closure of Agnews Developmental Center. These funds are needed in the budget year pending DDS approval of the three Bay Area Regional Centers housing proposals consistent with AB 2100.


4.            Vaccine News

Article A: The Age of Autism: Mercury and the Amish

By Dan Olmsted

WASHINGTON , May 20 (UPI) -- The cases of autism among the Amish that I've identified over the past several weeks appear to have at least one link -- a link made of mercury.

That's not something I expected to encounter. I had been looking for an unvaccinated population to test the controversial idea that vaccines, and in particular the mercury-based preservative called thimerosal, could be behind the apparent rise in autism cases over the past decade.

The concept: If the Amish have little or no autism, it might point a finger at something to which they have not been exposed.

Most of the medical establishment, it must be stated upfront, considers the idea that thimerosal could have played a role in the rise of autism disproven and dangerous. As noted in the last column, however, the director of the Centers for Disease Control and Prevention says she has "an open mind" about that possibility.

So do I, having come across correlations that made me want to look more closely at thimerosal. For instance, the first child diagnosed with autism in the United States was born in 1931, the same year thimerosal was first used in a vaccine. And autism diagnoses exploded in the 1990s, the same decade children got an increasing number of thimerosal-containing vaccines (it was phased out starting in 1999). Tantalizing, but proof of nothing.

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn't expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule. When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

To cut to the chase, what I've found to date is very little evidence of autism among the Amish in Lancaster County, far below the 1 in 166 rate of Autism Spectrum Disorders the CDC cites for children born in the United States today. I don't discount the idea that they might be more difficult to find or diagnose, and I'm still looking.

I did find three or possibly four children with autism and, weirdly, a possible link to vaccinations. One was a child adopted from China, where she got all her vaccinations before being vaccinated all over again when she got to the states. Her Amish-Mennonite mother said she believes that vaccine load caused her autism. The mother told me about another child who had what she described as an immediate vaccine reaction that left her autistic at age 15 months.

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

The pattern I was noticing then took an interesting twist. From a doctor's posting on an alternative health Web site, I learned about several cases of autism among Amish children who had not, in fact, been vaccinated.

I called that doctor, Lawrence Leichtman, at his office in Virginia Beach, Va. A pediatrician and geneticist who has been widely published in medical journals, he told me he was treating six unvaccinated Amish children and adolescents -- three from Pennsylvania, including one from Lancaster County; two from Ohio, and one from Texas.

That seemed to render any relationship between autism and mercury exposure in the Amish less likely. But, not after what Leichtman said next.

"By the way," he volunteered, "four of these six kids all have elevated mercury. The only two that don't, one of them is from Texas and one is from Iowa. But all of the people in Pennsylvania and one of the people in Iowa have elevated mercury."

Given what I had already come across in Lancaster County, I wanted to hear more about that. Were the mercury levels significantly higher? I asked. "Oh yes," he responded.

What did he think was going on?

"The people in Pennsylvania, I've actually tracked back on them," Leichtman said. "There's definitely a plume from one of the coal-fired power plants that just goes right over them. And the one in Iowa, it's a little less obvious because actually he's in the Amana Colonies, but I have seen reports of the area around Amana having elevated levels of mercury in the environment."

As it happens, the Pittsburgh Post reported last week that Pennsylvania has four of the nation's 10 "dirtiest power plants." Mercury is a byproduct of coal combustion.

Leichtman also believes that northern states "get most of the prevailing wind that comes across the Pacific. You get that trans-Pacific flow which is all Chinese mercury. We're getting a load of Chinese mercury, as far as I can tell."

Leichtman's comments meant that the two people I talked to, who knew anything about autism among the Amish, independently brought up mercury exposure -- in vaccines and in the environment-- as the cause of most of the cases.

That's a link others have made, although not to the Amish, whose autism prevalence has apparently never been studied:

- "We believe that thimerosal and environmental mercury -- which are worldwide pollutants -- are behind the surge" in autism in the 1990s, wrote Sallie Bernard in 2002. She is a founder of the group Safe Minds, which wants mercury out of all medical products. Bernard co-authored a controversial 1999 study about thimerosal, "Autism: A novel form of mercury poisoning."

- "In the end it is mercury in the brain that causes such problems, and that mercury can come from several sources," said Boyd Haley, chairman of the chemistry department at the University of Kentucky and another maverick on thimerosal.

"Therefore, a logical approach is to think that all mercury exposures are additive, even if some may be more causative than others."

Haley cited a recent Texas study, first reported by United Press International in March, that found an association between autism rates and exposure to industrial mercury emissions in Texas counties. One county with high autism but low exposure to mercury emissions turned out on closer inspection to be the site of a huge abandoned mercury mine, the researchers found.

Leichtman believes the damage to children is being done by environmental mercury, not the mercury in vaccines (my own research makes me think that if it's either, it's both). He said he can detect elevated mercury levels in about half his 500 autism patients.

"Environmental mercury is horrible," he said, "and I think that's where it's coming from. To me, people with autism are the canaries in the coal mine. A lot of them are reflecting the damage from all of that."

Leichtman, like a number of other doctors, is trying to flush mercury out of autistic children through a process called chelation (key-LAY-shun).

Chelation as a treatment for autism is unproven and controversial (what about autism is not unproven and controversial?), and it carries a risk of serious side effects. Chelation has been used for 40 years in cases of heavy metal toxicity, including lead poisoning.

But does it help children with autism?

"The people in Pennsylvania wouldn't take chelation," Leichtman said, and noted the Amish aversion to medical procedures and drugs. "One in Iowa did. He certainly did better."

We'll look at chelation and its implications in the next column.

e-mail: dolmsted@upi.com

Copyright © 2001-2005 United Press International


Article B: Noah, for one, is peeling back the layers of autism

David Wecker, Cincinnati Post
Publication date: 05-07-2005
http://news.cincypost.com/apps/pbcs.dll/article?AID=/20050507/LIFE02/505070319/1007/LIFE
 
The walls inside Terri and Tom Lewis' home in Deer Park are filled with the bright, 2-D crayon art of their three children, 7-year-old Bethany and the 4-year-old twins, Ivy and Noah.

Terri says Noah is emerging from autism. The official word from the medical establishment on autism is that there's no cure. But Terri says the establishment is wrong. She insists Noah is coming back to her, getting better. His drawings suggest she's right.

One he did last Mother's Day is of two jagged slashes of brown and purple. Another he did just two days ago is of a rainbow, beautifully drawn, in neat concentric arcs. Evidence of an emerging?

"He's light years better now," his mother says.

Terri contacted me to take issue with a recent column describing autism as "a lifelong developmental disability resulting from a neurological disorder." The column also said "some evidence" exists that autism may be a side effect of routine childhood vaccinations.

Some evidence? Terri wrote in her e-mail.

"The evidence is blindingly clear and still pouring in," she said.

"You have doctors testifying in Congress. They're calling it the biggest mistake in the history of modern medicine."

Like all moms, Terri wants to do what's best for her children. For instance, she made sure they had all their shots, every one on time. The twins had their first shots when they each weighed 6 pounds. By the way, boys with autism outnumber girls by four to one.

Terri noticed something not right with Noah early on, around his 20th month. Six months earlier, he'd uttered his first sentence, "Take Noah home!"

Then he began going backward, losing speech, drifting away from her. He wouldn't even look her in the eye. Terri could see his twin sister progressing, but not him. In his 25th month, she knew something was very wrong. At 27 months, he was diagnosed with "mild to moderate" autism. She knows she is fortunate to have caught it early.

Terri has since learned that many of the vaccines her children were given contained Thimerosal, a preservative that is nearly 50 percent mercury. After what she said was literally hundreds of hours of research, she has come to believe her family has been swept up in a national tragedy.

"Once a point of great national pride, there is actually extensive evidence ... that our nation's childhood vaccinations have been knowingly and terribly compromised," Terri's e-mail read.

The first vaccines containing mercury - again, as a preservative - began showing up on doctors' shelves in the late 1930s. Prior to that, there was no medical record of autism. The first cases were documented in 1943, in American children. The disease was not seen in Europe until the 1950s, after mercury was added to vaccines there.

In the early days, autism occurred in one in 5,000 children. The number increased in the '80s as more vaccines were added to the childhood medical regimen. Today, even the medical establishment agrees that autism now occurs once in every 166 children.

Terri has learned, too, that the symptoms of autism and the symptoms of mercury poisoning are the same: delayed or absent speech, poor social skills, a lack of awareness of pain. Also, the eye contact goes away. Mercury poisoning touches the mind and the body, as does autism. Mercury damages the body's digestive, nervous, immune and detoxification systems - all the systems under siege in autism.

In his book, "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy," New York Times writer David Kirby writes:

"Autism has rarely been reported outside of industrialized countries, at least until recent years. A good example is China, where companies such as Merck and Glaxo-SmithKline have began an aggressive pediatric-marketing campaign, selling millions of dollars in vaccines to the Communist government. ...

"On Aug. 11, 2004, the official Chinese news agency, Xinhua, reported that children suffering with autism in that country had suddenly and unexpectedly skyrocketed. In a few short years, the number of reported cases jumped from nearly nothing to some 1.8 million children."

In the late 1990s, the U.S. House of Representatives Government Reform Committee, reached this conclusion:

"Thimerosal ...in vaccines is likely related to the autism epidemic. This epidemic in all probability may have been prevented or curtailed had the FDA not been asleep at the switch regarding injected Thimerosal and the sharp rise of infant exposure to this neurotoxin.

"Our public health agencies' failure to act is indicative of institutional malfeasance for self-protection and misplaced protectionism of the pharmaceutical industry."

According to Terri, studies since then have established a conclusive link between mercury and autism.

"But mercury has always been known to be a neurotoxin," she says. "That's what so bizarre about all this."

This is a mere glimpse of the autism picture. Terri allows that the controversy is hotly debated. Of course it is. Massive amounts of money are involved. But in the small corner of the world where the Lewis family lives, the important thing is that Noah is getting better. His parents are making it happen.

They found a book by another mom of a child with autism, "Unraveling the Mystery of Autism and Pervasive Developmental Disorder," by Karyn Seroussi. It persuaded them to eliminate gluten - wheat, mostly - and dairy products from Noah's diet.

They read everything they could find about a growing number of physicians who follow what is called the DAN! protocol, short for Defeat Autism Now. Finally, their research led them to www.generationrescue.org, where they put it all together: The measures they were taking worked because they were helping Noah's body deal with and then detoxify the mercury.

Terri consulted a nutritionist and added digestive enzymes to Noah's routine. She and Tom began taking their son to sessions where a physical and occupational therapist work on him at the same time.

"Also, you do super one-on-one work with these kids, where you're down on the floor with them 15 to 20 hours a week, in their faces, doing different kinds of play therapy," Terri says.

"The latest is called RDI, Relationship Development Intervention. It seems to work. So does one called Greenspan."

After being diagnosed with autism, Noah would wake up in the middle of the night and stay awake for three hours. Now he sleeps through the night. His constant diarrhea has cleared up. Terri says he's almost back to where he should be with his speech. There is eye contact again. And his smile is back.

Noah was going backward. Two years later, he's moving forward, like a regular kid.

His return has been gradual. Autism, like mercury poisoning, comes off in layers, Terri says. Its behavioral symptoms fade in layers, too.

She is not deceiving herself. She charts out her son's progress in a logical, left-brain process that's highly attuned to self-inflicted baloney. She points out there are now documented cases of children recovering completely from autism.

"I think Noah will be all right - for two years, I have been slowly but surely watching him come back to me," she says.

"But there are still times when I'm gripped with fear."

###

Contact David Wecker at (513) 352-2791 or via e-mail at sambets@choice.net.


Article C: The Age of Autism: Absence of evidence

By Dan Olmsted

LEBANON , Pa. , May 9 (UPI) -- After several weeks of looking, the prevalence of autism among the central Pennsylvania Amish still appears remarkably low, and the few cases I have found suggest an ominous pattern.

In two columns last month I asked, "Where are the autistic Amish?"

My search encompassed Lancaster County, heart of Pennsylvania Dutch country, and I obtained a tentative answer. After inquiring widely, these three cases emerged:

--a girl, age 3, adopted from China by an Amish-Mennonite family (a very small percentage of Amish do vaccinate their children);

--a girl of about 8, described by the mother of the first child as a clear vaccine reaction at 15 months, and

--a boy of about 10.

Since then, I have become aware of possibly one more case in Lancaster County and a total of five more nationwide -- which will be the subject of a future column.

Meanwhile, there is the question of prevalence. There is no reason to be particularly interested in autism among the Amish -- unless it occurs much less frequently than normal. If it did, it would suggest either genetic immunity -- which is unlikely, because at least a handful of Amish are in fact autistic -- or lower exposure to something that, combined with genetic susceptibility, triggers autism.

In my view, the latter is more likely.

About 22,000 Amish live in Lancaster County, where they first put down roots almost 300 years ago after fleeing religious persecution in Germany. At the current rate of autism among the "English," as they call the rest of us, several dozen of them should be identifiably autistic.

My first Lancaster contacts basically fell into the "absence of evidence" category, which is intriguing, but establishes nothing. The well-known scientific axiom is, "absence of evidence is not evidence of absence."

In the absence-of-evidence category:

--"I've been an advocate for the past five years in Lancaster and I have yet to come across a case where an Amish family is struggling for services," said Jim Bouder of the Lancaster County Autism Support Group. "I haven't seen any."

--"There are a lot of other kids who have autism, but we haven't seen that in the Amish because they're not referring them," said Stu Symons, director of mental retardation and early intervention services for Lancaster County Mental Health/Mental Retardation, a public agency. "There's a lot of birth defects and other disabilities (among the Amish), but we haven't seen, necessarily, autism."

--"That's one of our head-scratchers," said another local person who works with autistic children.

The Amish-Mennonite mother with whom I spoke, Stacey-jean Inion of Leola, said the view from inside looking out is no different.

"Everywhere I go (outside the Amish community) I find children who are autistic, just because I have an autistic daughter -- in the grocery store, in the park, wherever I go," Inion said. "In the Amish community, I simply don't find that."

Though all this seemed intriguing, it did not constitute proof of anything. Because of the insular and unusual nature of the Amish community, everyone outside might just be missing the necessary evidence.

Among the dozens of e-mail messages I read after publishing the previous articles, several made exactly that point.

"I do not know of any Amish or Mennonite children with autism," said one doctor in a neighboring county, "but it would be difficult to assess this because these families rarely come to medical care for that type of problem, nor do they use Early Intervention or IU (Intermediate Unit) services. Thus, the incidence of autism in that population is unknown."

One message board posting even suggested because there apparently have been no studies of Amish people with autism, they must be there.

"Proof? Evidence? Where is it written other than a newspaper article or forum message? A search for 'amish autism' on ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed only comes up with a 'No items found' message. You would think that anything that significant would actually be published."

You would think.

This past weekend, I traveled back to Pennsylvania and met with a person who gave me the best insights yet into autism in the Amish community here. What he had to say was the tipping point between absence-of-evidence and evidence-of-absence.

That will be the focus of the next column.

--

This ongoing series on the roots and rise of autism aims to be interactive with readers and welcomes comment, criticism and suggestions. e-mail: dolmsted@upi.com

Copyright © 2001-2005 United Press International


Article D: How I Came To Be Involved in "Evidence of Harm"

By David Kirby, in the Rapid Response section of the BMJ

http://bmj.bmjjournals.com/cgi/eletters/330/7500/1154#106916

I was doing some research for freelance magazine articles and someone had told me about some mothers in Los Angeles who were researching alternative treatments for their children with autism. I was writing for women’s magazines and thought it sounded interesting. So, I talked to some of the women out in Los Angeles. One of them rather casually mentioned that she thought, or some people thought, that the cause of autism might be the mercury in vaccines, and I had never heard of such a thing. I thought maybe she was a little, not crazy, but mistaken, and I put it in back of my mind.

Still, I thought it was interesting, and then a week later, the Homeland Security Bill passed and I found out there was a secret rider in there to dismiss lawsuits against Eli Lilly. And that’s when the journalist in me said, "I think there is more to this story."

I had never met a person with autism in my life and I had never heard of Thimerosal. And I had certainly never heard of any connection between any form of mercury and autism, although I did know mercury was not good for you. But I don’t think I realized the extent to which it could do damage in your body. So, I was 100% unfamiliar with this story right up until November of 2002.

In school I had not know any autistic children People who insist or say that there is no autism epidemic—that it is just better reporting and better diagnostics—I really would like to pose the question to them that Mark Blaxill, from Safe Minds, asks: Where are all those people in my generation, in my school, with autism? Where are the 1 in 166 autistic adults? We can’t find them. So, they have either been institutionalized, or they passed away, or they somehow had a miraculous recovery because they don’t seem to be around. And Mark calls that the "hidden horde" and I think it’s a really good point.

On July 9th of 1999 when the Public Health Service and the American Academy of Pediatrics issued a joint statement announcing that they had added up mercury burden in children’s vaccines and found out they were over the EPA limit. Up until that time, parents were certainly researching alleged connections between vaccines themselves—particularly MMR, but also DTP—but not necessarily mercury. With one notable exception, a man named Albert Enayati out of New Jersey. He was the head of Cure Autism Now in New Jersey. And he started researching this on his own—even before the joint statement was issued. But he was not entirely convinced, and couldn’t get a lot of information on it at the time. But then when the joint statement was issued, he put it all together.

Rates of Autism in the U.S. and Denmark The rate of autism in the U.S.

is about 60 per 10,000 children, or 1 in 166. Now, that is for ASD, not full-blown autism. However, in other countries in Europe where they have done extensive studies, and where Thimerosal use has not been a common practice for the last decade or so, the autism rates are considerably lower—particularly in Denmark because that’s where it has been studied, probably, more than anywhere in Europe. I believe the rates are about 7 per 10,000 children.

In the U.S. mercury exposure exceeded Environmental Protection Agency

(EPA) guidelines At the peak of exposure, if a child had received all

mercury- containing vaccines, that is, vaccine brands that contained mercury, they would have received many, many times over the EPA limit on those particular days of the visit to the doctor. That would be a ‘bolus’

exposure—a peak, intermittent exposure, as opposed a chronic, low-dose exposure. So, these children would have received at birth 12.5 micrograms of mercury and, depending upon how much they weighed, for an 8 pound child that would be about 35 times over the EPA limit, but for a 4 pound child it would be double that—so, it would be 70 times over the limit. At 2 months the children were brought back, that’s when they were still relatively small and when many important systems inside the body are still developing. And that’s when they received the most amounts of mercury, 3 shots, 62.5 micrograms of mercury. For a 10 pound kid, it’s about 137 times over the EPA limit. And then of course, at 4 months they came back, at 6 months, and then a year.

So, in that first year most kids who were receiving mercury got about 212 micrograms.

The FDA realized bolus exposures were occurring in 1999 It would appear the U.S. FDA (Food and Drug Administration) never looked at the issue of bolus exposures until 1999, when they were ordered by Congress to do so.

We know that company officials at Merck did the math way back in 1991, thanks to an excellent report in the Los Angeles Times about two weeks ago.

The company never bothered to tell the government or the public that they had done this math. When I talk about the ‘math,’ I mean the simple conversion of percentage of volume into actual micrograms of weight. And no one at the FDA as far as we know did that until 1999. When they did do that, that’s when they got the statement out and urged companies to start removing mercury from the childhood shots.

The public health institutions did some very clever mathematical footwork, I would say. They took the first six months of exposures—so, that’s 4 bolus exposures—birth, 2 months, 4 months, 6 months—added them up, computing it was 162.5 micrograms of mercury exposure over a period of 180 days. So, they simply averaged that out and came up with a figure of 0.9 micrograms of exposure per day—on average. That completely discounts the days of exposure where the bolus dose is obviously much higher.

The analogy I use—there are a couple of them. I quote Lyn Redwood, who is of course one of the lead, if not the lead characters in the book and went to great lengths to try to prove this theory. You can take two Tylenol® a day for 60 days and you will be fine. But if you took 120 Tylenol® in one day, that’s a lethal dose and you’ll probably die.

Symptoms of mercury poisoning vs. symptoms of autism There are many, many similar symptoms that cross over and they are quite remarkable, broken down into various different categories. Again Safe Minds were the first people to really pioneer this work looking into these similarities. They published a paper, authored by Sallie Bernard, et al., called Autism: A novel form of mercury poisoning. And in it, they literally went down and compared symptom by symptom, and found in the literature references to behaviors and neurological problems, speech disorders and sensory problems and the list goes on and on, that were virtually identical between mercury poisoning and autism. But then also, we must remember that mercury poisoning does not always manifest itself in the same way nor does autism. So, that then left them open to attack by their opponents who said you can’t make that comparison.

Probably most famous historical case of mercury poisoning is Mad Hatter’s disease. And of course, people who made hats up until not too long ago, were exposed to large amounts of mercury vapor used in the making of the felt. Mad Hatters were prone to outbursts of emotion, at the same time they would withdraw from social venues. They would have lack of eye contact, they would be very irritable, huge bouts of depression. And of course, it was exposure to mercury that made them "mad."

Pink disease is even more interesting, probably less known in this country. It appeared in the western world, mostly in Europe, Canada, and Australia, in the 1930’s up until about the 1950’s. And for a long time people suspected that it was inorganic mercury in the teething powder that was put in the teething rings for their children. And indeed, in the end, it did turn out that was the cause. The symptoms, the reason it was called Pink’s disease, is the peeling of the skin, a rash that was red in color, and that’s how the word came about. Now, autistic children generally don’t have that symptom. So, Pink disease obviously is not the same thing as autism. But many, many of the other symptoms overlap remarkably. And I discuss them in the book. There is an actual adult survivor of Pink disease who describes her symptoms from the inside out. And they are identical. I think any parent of an autistic child reading what this woman went through, or reading the general symptoms of Pink disease, (knows) they equally match autism. And of course, finally, industry very reluctantly in the 1950’s, did not want to remove the mercury but thought they might have a problem and potential law suits on their hands, so they did. And within years, Pink disease disappeared, and today it’s virtually unheard of.

American and European agencies begin to assess the risks of Thimerosal in pharmaceutical products European agencies, I think, got a head start on the U.S. And if you go even a little further east to the Soviet Union, Russia, they took mercury out of vaccines apparently back in 1982. There is a paper that was published that’s in my book, it was published saying mercury was completely inappropriate for use of this kind and it was toxic.

Scandinavia removed mercury from vaccines in 1992. And the Europeans started looking at this issue. Well, actually, back in 1985 also there was a paper published by, basically, the equivalent of the head of the FDA in the United Kingdom saying the same thing, "Thimerosal is not safe and should not be used." That document, one has to assume, was in the library of the FDA, but they never bothered to look at it. Right around 1998, the European Union started moving to propose banning Thimerosal in vaccines in Europe. And of course in this country it started in 1999.

FDA thinks there might be a cause for concern with Thimerosal in vaccines Dr. Patriarca, just before the joint statement was issued—so, back in July of 1999 when he knew this was coming out and he had seen the math—updated his colleagues and sent out a couple of e-mails to them. The first one saying, "How did this happen? This is 9th grade algebra. Anybody could have sat down and done these conversions—why didn’t we?" In the second e-mail he writes that he is afraid that "the perception when this all comes out will be that the FDA, CDC, and others were asleep at the switch." Which seems like that’s what they were. As far as recall is concerned, Safe Minds attempted repeatedly, over and over again, both in person and in letter form, to have the FDA recall these Thimerosal- containing vaccines, as did Dan Burton, chairman of the Government Reform Committee, several times, and the FDA simply refused.

Joint Statement recommends delaying the birth Hep B vaccine? One of the recommendations in the Joint Statement in 1999, was to move the birth dose of Hepatitis B back at least until 4 to 6 months. And they did in the statement say that the schedule allowed that flexibility.

There was resistance apparently in a Hepatitis Control Report published on the part of the CDC. They were afraid that if people didn’t get the birth dose, they might not start the Hepatitis B series at all. The American Academy of Pediatrics, to their credit, fought very hard to have the recommendation included to postpone the birth dose.

Was Thimerosal ever studied for safety by the FDA or anyone else?

Thimerosal safety studies not conducted by the FDA The only safety study on record and on file at the FDA actually predates the FDA. It concerns a 1929 trial by Eli Lilly & Company, shortly after Thimerosal was first invented.

They decided to test it on a group of 22 patients who were dying of acute meningitis. So, they injected the patients and followed them for about 3 days, after which time most of the patients had died from meningitis. And in that period they noted no adverse effects from the Thimerosal. So, that was the safety study and that, to this day, sits in the FDA as the only proof of safety of the substance.

Warning to Eli Lilly Warnings were issued to Eli Lilly over the decades, beginning in the 1930’s and going right up to 1990’s from scientists, from medical academies, and even from their own employees. And this has all been produced through the discovery process by Andy Waters, the main attorney in a lot of the civil cases.

A lot of parents all started on their own, I think without even knowing that other parents were doing the same thing—just looking into this all over the country. My book follows the story of mostly, but not entirely, the Safe Minds parents, in particular Lyn Redwood, Sallie Bernard, Liz Birt, Albert Enayati, Heidi Roger, and Mark Blaxill. And of course more parents come into the story as it progresses. Safe Minds I think gets credit for really spearheading this and really taking on the government and the drug companies. They’re the ones, a group of parents, with the exception of Lyn a nurse practitioner, with very little medical experience. They wrote their paper and they got it out there and they banged down the doors of government to get in, to get meetings, to talk to these officials to present what they found. And they really thought that, once they had done that, the government would take their concerns seriously and get on the ball and try to figure this out. And that’s not the response that they received at all—which I think is very disheartening for them.

"It just won’t go away."

At one point I actually toyed with the idea of making that the title of my book, because "evidence of harm" of course occurs many, many times as a phrase in my book. But so does the term, "It won’t go away." Thomas Verstraeten, who was hired by the CDC, came over from Belgium and his first assignment was to sort through the Federal Vaccine Safety Datalink database and look for adverse outcomes among children who were vaccinated with mercury – to see if there was a higher rate among children who had higher levels of exposure. At his first run of the numbers, he came up with some extremely high and very statistically significant associations, including autism outcomes and Thimerosal exposures. He then went back and re-cut the numbers—literally. He stratified them.

In the first round, basically there was this large group of kids broken down into exposure/no exposure. Then he broke them down by different ages and by different exposure rates, and really started to break them down.

And the relative risk for autism and other disorders came down considerably, but they did not come down all the way. Many of them were still extremely elevated—alarmingly elevated—and many of them were statistically significant. At this time, when he wrote the memo, the relative risk of autism was at 2.48. Anything over 2.0 is considered causation in a court of law, however it was not completely statistically significant—it is a little complicated to explain the reason why—but it was still high and it was close to statistically significant.

The CDC still won’t admit that it has a grave problem. I think they knew they had a PR problem. At the same time, they were fully informed by the people of the FDA what was going on in 1999 as the e-mails will attest.

I think when Thomas Verstraeten, then in November/December of 1999, first ran the numbers, that’s when the NIP, the National Immunization Program officials, I think must have known they had a problem. But they will not to this date admit that there was a problem Generations 0 through 4 Generation 0 is so-called because it was sort of discovered after the first 4 generations were discovered. Of these 5 generations, by the way, the only generations that were ever meant to see the light of day were generations 3 and 4, the last two. The last one being published in the Journal Pediatrics.

What is called ‘Generation 0,’ again was the first run of the numbers. I am not a biostatistician, so, I don’t know how valuable this data is, but it does exist, it is CDC data. And Verstraeten basically took kids at 1 month of age who had received more than 25 micrograms, and then kids who had received 0 micrograms at 1 month of age, and compared them. And he found out that for the kids in the exposure group, the rates were astounding. For autism it was 7.62, for ADHD it was even a little bit higher, for ADD it was a little bit lower—but they were all way up there and statistically significant. That’s when he cut the numbers again and came out with what is now referred to as the ‘Generation 1’ numbers, when autism fell to 2.48.

VSD Phase 1 study The VSD Phase 1 study is also referred to as ‘2/2000.’ There was a paper that Verstraeten wrote for his colleagues in February, 2000—so, it was his second run of the numbers, and that document, which was produced for it, is stamped, every single page, "Confidential. Do not distribute." That was never meant to see the light of day. That then became ‘Generation 1.’ Only people inside the CDC knew about it.

What then became ‘Generation 2’ was in June of 2000, at a top-secret meeting outside of Atlanta, held at a resort called Simpsonwood, where the CDC invited people from the FDA, other government agencies, the medical academies, and the vaccine-producing drug companies to come review the data that Verstraeten had analyzed. By this time, when Verstraeten presented, he was now on ‘Generation 2,’ and the relative risk for autism had since dropped to 1.69. The other risks had dropped, although there were some that were still elevated, particularly speech and language delay. And an umbrella category that they did—they took all of the disorders, including autism, and put them into something called NDDs, neurological developmental disorders.

And they took them and grouped them together and looked at them. They were elevated, and they were statistically significant, and there was a dose response curve. In other words, for every increment—for every increase—in mercury exposure, there was a relative increase in risk for one of these outcomes. That got presented.

Shortly thereafter Verstraeten presented more or less the same numbers in a public meeting—at a CDC meeting in Atlanta, a vaccine committee meeting. That was entered onto the record, however to this day his report is not posted online. The only way I got to see it was because Lyn Redwood was there and somehow got an early transcript.

Verstraeten did present findings where the risks were lower than in the Phase 1 study, but they were still elevated and many of them were still significant. At that point, I think the drug companies were aware that there was potentially at least a PR problem out there, and that did eventually start lobbying activities on Capitol Hill to protect the companies from liability.

Eli Lilly is connected with legislators, political appointees, and pending legislation In terms of the Bush administration, and at the time of, particularly, the Homeland Security Bill, Bush had installed Eli Lilly vice-president for corporate strategy, Mitch Daniels, as his Director of the Office of Management and Budget—a highly powerful position within the White House. He also named Mitch Daniels to the National Security Council and the National Homeland Security Advisory Counsel. The CEO and President of Eli Lilly, Sidney Taurel, was likewise named to the president’s Homeland Security Advisory Counsel. Only, I think, 13 positions were made open—highly coveted spots for people in industry because, as the government started to formulate its terrorism response after 9/11, it needed to incorporate the private sector into its plan. And for a pharmaceutical company to be in there was very beneficial for them. The list goes on.

+ Article continues:

http://bmj.bmjjournals.com/cgi/eletters/330/7500/1154#106916

Have you read Evidence of Harm yet?

Becky Estepp’s husband on his 2 nd tour of duty in Iraq is finding the time!

(TACA is sending special thoughts and prayers to the Estepp Family on his safe return!)


Article E: Appeal to the Autism Community

Dear Parents, Grandparents and Friends of Children with autism,

The possibility that Thimerosal and MMR vaccination play any role in Regressive Autism has been denied and ruled out by a special committee of the Institute of Medicine at a meeting on February 9, 2004.

In their report, the committee members essentially said that the epidemic of regressive autism we are facing is due to other factors and that further research into a vaccine link should not be encouraged nor supported.

I hope that you will agree to endorse and second my request to President Fineberg of the IOM to retract the report in question, form a new committee under a new Chairperson and reconvene meetings on the subject.

I also ask you to please convince your groups and associations to use their strong influence to support this effort.

Your help is urgently needed.

You can encourage research in the environmental, biological and immune causes of Regressive Autism or you can do nothing and watch as we lose another generation.

Thank you.

F. E. Yazbak
----------------------------

F. Edward Yazbak, MD, FAAP
TL Autism Research
70 Viewcrest Drive
Falmouth, Massachusetts 02540
     Tel (508) 540 5060   Fax (508) 457 9814



Harvey V. Fineberg, MD, PhD
President
Institute of Medicine
500 Fifth Street NW
Washington DC 20001


May 11, 2005


Dear President Fineberg,

I respectfully request that you

o      Withdraw the report of the Immunization Safety Review Committee Meeting 9 of February 9, 2004

o      Form a new committee under a new chairman all of whom should be impartial experts independent of influence of Government and pharmaceutical companies.

o      Reconvene a meeting on vaccines and autism as soon as possible and ensure that all independent research is considered. 

I base my request on the attached information.

You and only you, Dr. Fineberg can reverse the damage that has been done to thousands of children and their families by the unfortunate, biased and scientifically flawed report of the committee.

Respectfully,

_____________________
F. Edward Yazbak, MD
F. Edward Yazbak, MD, FAAP
TL Autism Research
Falmouth, Massachusetts 02540


Withdraw the Report

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------    
o      The Institute of Medicine should withdraw the report  of the February 9, 2004 Immunization Safety Review
       Committee Meeting 9:  Vaccines and Autism
o      A new Immunization Safety Review Committee should be formed under new chairmanship
o      A meeting of the committee should be convened as soon as possible
________________________________________________________________________________________________

Background Information

A. IOM Committee conclusions are based on research and information that justify one of the following classifications:

1. No evidence bearing on a causal relation.
2. The evidence is inadequate to accept or reject a causal relation.
3. The evidence favors rejection of a causal relation.
4. The evidence favors acceptance of a causal relation.
5. The evidence establishes a causal relation.

B. Between school years 2002-03 and 2003-04, the number of children with autism and ASD attending school in the United States increased by 18.18% for age 6-21 from 118,603 to 140,922 and by 19.5% for age 3-5 from 19,017 to 22,724. (1-4)

C. HHS, CDC and AAP have conceded in 2004 that 1 in 166 children in the United States are diagnosed with an autism spectrum disorder. (5)

D.  On January 15, 2004, Congressman Weldon wrote to CDC Director Dr. Julie L. Gerberding (6): “I am writing to ask that you post-pone the February 9, 2004, Institute of Medicine (IOM) Immunization Safety Review Committee meeting. Pressing forward with this meeting at this time, I believe, will further undermine the credibility of the Centers for Disease Control (CDC) on matters of vaccine safety and do damage to the reputation of the IOM. I believe the proposed date of this meeting, which you have the ability to change, is in the best interests of no one who is seeking the truth about a possible association between vaccines and neurodevelopmental disorders, including autism… Additionally, I am concerned that the agenda set forth in the meeting is inadequate and incomplete. With respect to the MMR/autism concerns, the IOM is dedicating one hour. Two witnesses are woefully inadequate to update the committee on the research to date. The time set aside for a discussion of epidemiology relating to thimerosal and autism is heavily biased against those who have raised these concerns and will not allow for a fair and balanced discussion of the literature. The time set aside for a discussion of the biological mechanisms of thimerosal and autism is inadequate to allow a full discussion of the issue. To consider two issues of such significance in only seven hours does not serve the public interest. To the outside observer it does not appear to be a serious effort to examine these critical issues. Any conclusions drawn from this meeting, including any report issued, will be viewed as suspect given the very limited time dedicated to examining very incomplete information.”  

Dr. Gerberding responded that she had shared Dr. Weldon's concerns with IOM President, Dr. Harvey V. Fineberg but that the meeting will be held as planned. She wrote: “My own view is that it is extremely important to have the IOM conduct an objective review of emerging data when it has a bearing on vaccine safety as quickly as possible.  In addition, the process should be ongoing at regular intervals, to keep up with this science of vaccine safety as new information becomes available.  We intend to renew our agreement with the IOM to ensure continuation of the safety review process.” (7)

The Immunization Safety Review Committee meeting of February 9, 2004

At the meeting (8, 9), Dr. Weldon who spoke first remarked: “This atmosphere of intimidation even surrounds today's hearing. I received numerous complaints that this event is not a further attempt to get at the facts but rather a desire to sweep these issues under the rug.  I have the utmost respect for the Institute and the Academy nonetheless I shared these concerns with Dr. Gerberding.  Last week she called me to assure me that this is not the case.  She informed me that she wants to meet with me and some of the parents, clinicians, and researchers to work with them to get the proper answers."

The Congressman was followed by Mady Hornig MD, Mark R. Geier, M.D., Ph.D., H. Vasken Aposhian, Ph.D., David Baskin, M.D., Boyd Haley, Ph.D., Jeff Bradstreet, M.D., FAAFP and Vijendra K. Singh, Ph.D. who presented research supporting a vaccine-autism connection. Dr. Andrew Wakefield was not invited.
  
The Report

The report of the meeting was released in May 2004.

The following is from the May 18, 2004 press release (10) “MMR Vaccine and Thimerosal-Containing Vaccines Are Not Associated With Autism, IOM Report Says” in the National Academies News: “Based on a thorough review of clinical and epidemiological studies, neither the mercury-based vaccine preservative thimerosal nor the measles-mumps-rubella (MMR) vaccine are associated with autism, says a new report from the Institute of Medicine of the National Academies. Furthermore, the hypotheses regarding how the MMR vaccine and thimerosal could trigger autism lack supporting evidence and are theoretical only. Further research to find the cause of autism should be directed toward other lines of inquiry that are supported by current knowledge and evidence and offer more promise for providing an answer.”
In other words, according to the committee, both MMR-autism and Thimerosal-autism research should be abandoned, because they are based on unsupported hypothetical theories, and any future autism research should be directed elsewhere and never again to the MMR/Thimerosal and autism connection.
In the press release, Marie McCormick MD, Chair of the Committee was quoted as saying: “The overwhelming evidence from several well-designed studies indicates that childhood vaccines are not associated with autism."

In an interview, Dr. McCormick also claimed that “The weight of that evidence is pretty substantial"(11)

In a similar situation in 2001, Dr. McCormick stated “It [MMR] is as safe as a vaccine can get” when the Immunization Safety Review Committee “did not exclude the possibility that MMR vaccine could contribute to ASD in a small number of children”. Her comments then prompted Walter O. Spitzer, MD, Emeritus Professor of Epidemiology at McGill University to write: “As an epidemiologist who has been a Member of the IOM since 1986 … I am embarrassed by the process of this latest Report and would urge President Shine of the IOM to retract the Report until the message has been clarified. What was released, the IOM Report or the McCormick Position?” (12)

On May 29, 2004, Dr. Weldon criticized the conclusions of the February 9 meeting and the fact that they were not based on biological evidence but mostly on epidemiological studies by Verstraeten, Hviid, Madsen, Stehr-Green and Miller. He then went on to enumerate the multiple limitations and deficiencies of each of the five studies. (13)

A year later, it is evident that Dr. Weldon was correct and that Dr McCormick's “overwhelming evidence” and “well-designed studies” have crumbled. In addition, the findings of the Madsen MMR study were challenged (14-15) and several other epidemiological studies exonerating Thimerosal and the MMR vaccine were effectively neutralized shortly after they were published. 

Meanwhile, extensive biological research has taken place. The animal studies by Hornig (16) have been supported by those of Burbacher (17) and other solid and reliable thimerosal studies have been published (18-28).

Wakefield's research has been widely duplicated and many more children with autism have been found to have evidence of measles virus genomic RNA in the blood and cerebrospinal fluid (29, 30) with elevated levels of myelin basic protein autoantibodies.

A significant number of children have exhibited two autistic regressions: one after their initial MMR vaccination and the second after their MMR booster following a period of relative improvement. This Challenge-Dechallenge-Rechallenge was accepted by the IOM as evidence of causation in 1991 in a case of recurrent hemolytic anemia following DPT vaccinations. It was also discussed in detail in a subsequent IOM report in 1994 entitled “Adverse Events Associated with Childhood Vaccines. Evidence Bearing on Causality.”
Considering all of the above, the available evidence does not favor rejection of a causal relation between Thimerosal or MMR and autism spectrum disorders.

Official Request

I respectfully request that President Harvey V. Fineberg, MD, PhD:

o      Withdraw the report of the Immunization Safety Review Committee Meeting 9 of February 9, 2004
o      Form a new committee under a new chairman all of whom should be impartial experts independent of influence of Government and pharmaceutical companies.
o      Reconvene a meeting on vaccines and autism as soon as possible and ensure that all independent research is considered. 

By supporting this request, Director Gerberding can prove that she really meant to work with parents, clinicians, and researchers to get the proper answers.


References:

1.      http://www.ideadata.org/tables26th/ar_aa3.htm
2.      http://www.ideadata.org/tables27th/ar_aa3.htm
3.      http://www.ideadata.org/tables26th/ar_aa2.htm
4.      http://www.ideadata.org/tables27th/ar_aa2.htm
5.      American Academy of Pediatrics, Center for Disease Control's National Center on Birth Defects and Developmental Disabilities. 2004. Autism A.L.A.R.M. http://www.medicalhomeinfo.org
     http://www.medicalhomeinfo.org/screening/Autism%20downloads/AutismAlarm.pdf
6.      http://www.nationalautismassociation.org/grassroots12204.php
7.      Reference available on request
8.      http://www.iom.edu/subpage.asp?id=18065
9.      http://www.partnersforimmunization.org/meetingupdates_vac2904.html
10.      http://www.iom.edu/report.asp?id=20155 (Press Release)
11.      http://www.medicalnewstoday.com/medicalnews.php?newsid=8551
12.      http://www.mindfully.org/Health/Autism-Mercury-Vaccine.htm
13.      http://autismone.org/AutismOne2004/presentations/Weldon%20Dave,%20Congressman,%20MD.pdf
14.      Goldman GS, Yazbak FE: An Investigation of the Association between MMR Vaccination and Autism in Denmark. JAmPhysSurg 2004; 9(3):70-75http://www.jpands.org/vol9no3/goldman.pdf
15.      Stott C, Blaxill M, Wakefield AJ: MMR and Autism in Perspective: The Denmark Story. JAmPhysSurg 2004; 9(3):89-91
     http://www.jpands.org/vol9no3/stott.pdf
16.      Hornig M, Chian D, Lipkin WI. Neurotoxic effects of postnatal thimerosal are mouse strain dependent. Mol Psychiatry. 2004 Sep;9(9):833-45
17.      Burbacher  TM, Shen DD, Liberato N, Grant KS, Cernichiari E, Clarckson T. Comparison of Blood and Brain Mercury Levels in Infant Monkeys Exposed
to Methylmercury or Vaccines Containing Thimerosal  
. http://ehp.niehs.nih.gov/members/2005/7712/7712.pdf
18.      Waly M, Olteanu H, Banerjee R, Choi SW, Mason JB, Parker BS, Sukumar S, Shim S, Sharma A, Benzecry JM, Power-Charnitsky VA, Deth RC. Activation of methionine synthase by insulin-like growth factor-1 and dopamine: a target for neurodevelopmental toxins and thimerosal. Mol Psychiatry. 2004 Apr;9(4):358-70.
19.      James SJ, Slikker W 3rd, Melnyk S, New E, Pogribna M, Jernigan S. Thimerosal neurotoxicity is associated with glutathione depletion: protection with glutathione precursors. Neurotoxicology. 2005 Jan;26(1):1-8.
20.      Geier DA, Geier MR. A comparative evaluation of the effects of MMR immunization and mercury doses from thimerosal-containing childhood vaccines on the population prevalence of autism.Med Sci Monit. 2004 Mar;10(3):PI33-9.
21.      Geier D, Geier MR. Neurodevelopmental disorders following thimerosal-containing childhood immunizations: a follow-up analysis.
Int J Toxicol. 2004 Nov-Dec;23(6):369-76.
22.      Geier DA, Geier MR. A two-phased population epidemiological study of the safety of thimerosal-containing vaccines: a follow-up analysis. Med Sci Monit. 2005 Mar 24;11(4):CR160-170
23.      Blaxill MF, L Redwood L, and Bernard S.Thimerosal and autism? A plausible hypothesis that should not be dismissed. Medical Hypotheses; 62: 788-794, 2004.
24.      Humphrey ML, Cole MP, Pendergrass JC, Kiningham KK. Mitochondrial Mediated Thimerosal-Induced Apoptosis in a Human Neuroblastoma Cell Line (SK-N-SH). Neurotoxicology. 2005 Apr 30; [Epub ahead of print]
25.      Parran DK, Barker A, Ehrich M. Effects of Thimerosal on NGF signal transduction and cell death in neuroblastoma cells Toxicol Sci. 2005 Apr 20; [Epub ahead of print]  
26.      Havarinasab S, Haggqvist B, Bjorn E, Pollard KM, Hultman P. Immunosuppressive and autoimmune effects of thimerosal in mice. Toxicol Appl Pharmacol. 2005 Apr 15;204(2):109-21. 
27.      Ueha-Ishibashi T, Tatsuishi T, Iwase K, Nakao H, Umebayashi C, Nishizaki Y, Nishimura Y, Oyama Y, Hirama S, Okano Y. Property of thimerosal-induced decrease in cellular content of glutathione in rat thymocytes: a flow cytometric study with 5-chloromethylfluorescein diacetate.Toxicol In Vitro. 2004 Oct;18(5):563-9
28.      http://www.ewg.org/reports/autism/execsumm.php
29.      Bradstreet JJ, El Dahr J, Anthony A, Kartzinel JJ, Wakefield AJ. Detection of measles virus genomic RNA in cerebrospinal fluid of children with regressive autism: a report of three cases. JAmPhysSurg 2004; 9(2):38-45                                        http://www.jpands.org/vol9no2/bradstreet.pdf
30.      http://www.icdrc.org/executive_briefing.html


5. Fun Activities

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: The Saturday schedule is: (No carousel on June 25) July 23rd
    August 20 th, September 24 th, October 22 nd and November 19th.
  • 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!!


Announcing A New FUN Monthly TACA Family Event!

 

May 26 -- June 23 Thursday 6:30-8:30pm

Pump it UP in Huntington Beach will be our TACA playground for 2 hours the last Thursday of every month from 6:30pm to 8:30 pm.

Pump It Up has the latest inflatable designs that are engaging, challenging and interactive. Kids love to play on recreational inflatables in our indoor arenas, and they continue to enjoy this fun activity time after time, visit after visit. Kids of all ages love ...Bouncing ...Sliding ... Climbing and ...Tumbling. Indoor inflatables include a custom inflatable bounce house, inflatable slide, inflatable obstacle course, inflatable boxing arena, and an inflatable jousting arena. There are also tricycles and scooter cars etc. on the floor. It’s a great chance to meet other parents and another great play-date opportunity for our kids!

Details: Ages 2+ are welcome, and equipment accommodates even adult sizes should you like to accompany or assist your child on this large equipment. Siblings are welcome. Each jumping child for our group is $6. When you come you will check in to sign a waiver for insurance, and remove shoes before entering arena. We will not be having any music playing at this event (to reduce auditory exposure.) 35 children will be able to attend each event and will be offered on a first-come, first-served pre-sign up basis!

Email Lynn Milucky (not Pump It Up) at funnybunnypaw@yahoo.com or call Lynn’s cell 714-925-3882 to reserve your spot!

Pump It Up is located at the Northwest corner of Gothard St and Heil Ave in the "HB Business Center."  Just 1 mile from the intersection of the 405 Freeway and Beach Blvd. (go around to the back of the business complex, follow Pump It Up signs)

16351 Gothard Street Suite C
Huntington Beach , CA 92647 // 714-847-9663 http://www.pumpitupparty.com/huntingtonbeach.html


Retreat Exploring Community Living For Families With ASD Children

 

From Jacquelyn McCandless and Jack Zimmerman:

In June of last year, twelve families gathered at the Ojai Foundation in Southern California to explore the possibilities of creating a temporary community that would provide an active healing environment for their ASD children. Some of the families were complete, some had more than one ASD child, some consisted of only one parent and some included one or more NT siblings. The children ranged from 4 to 17 years of age. Activities during the three-and–a-half days included swimming, drumming, council (a highly effect form of group communication), a variety of OT activities, biomedical information sessions, food preparation and many other aspects of community life. Parents played a major role in planning all aspects of the retreat, including raising funds for scholarships.

This fruitful experience has led us to offer the “Second Annual Gathering for ASD Families” next July 23—30, again at the Ojai Foundation, a 40 acre retreat center about 90 miles northwest of Los Angeles that specializes in retreats for children. The synergy of families with a common intention living together in a place of natural beauty and rustic accommodations provides a strong healing environment. The GF/CF/SF diet is implemented by the families involved under the direction of an experienced food professional. An experienced Foundation Staff and therapeutic specialists augment the parents in facilitating the program.

This year’s week-long retreat will include daily water therapy and recreational swimming in a nearby pool, an excursion to the beach, daily councils, information sessions for parents, OT group activities, arts and crafts, working in the gardens and open time for spontaneous community experience. Interns augment the staff and provide opportunities for parents to meet together without concern for the children’s well being. Jack and Jacquelyn, along with the parents and grandparents, are part of the “unpaid staff.”

For information concerning housing arrangements, activities and fees, please email Jack Zimmerman at: jmzimmerman@yahoo.com or by phone at (818) 999-5436.


Camping Unlimited - Camp Krem has provided year-round programs and 10 weeks of SUMMER CAMP each summer for children with developmental disabilities

 

Since 1957, Camping Unlimited - Camp Krem has provided year-round programs and 10 weeks of SUMMER CAMP each summer for children with developmental disabilities such as Autism, Down Syndrome, and other differences. Our Camp Krem is located in the Santa Cruz Mountains, 60 miles South of San Francisco. There are 5 exciting sessions, 7 thru 12 days each, traditional programs, outdoor adventure camps and traveling camps. Campers sleep in small cabin groups of 6-7 with a staff ratio of 2:1. Activities include: Daily swimming, Arts, Crafts, Music, Sports, Dance, Drama, Nature, Field Trips, and much more. Hiker Camper  Our website www.campingunlimited.com includes lots of pictures, and a summer camp application to download.  IMPORTANT! All parents must call and PRE-REGISTER before sending in application.

There is a Registered Nurse, and a caring, experienced staff to assist with all your camper's social, emotional and personal care needs.

Camping Unlimited is vendored by Regional Centers throughout California. There are "camperships" available for parents in need.

For more information, please contact our office at (510) 222-6662 or email us at campkrem@campingunlimited.com , or zzzabby@aol.com .

We would be happy to answer all of your questions.Hiker

Swim Lessons

 

Let me know if you or anyone in your group is interested in swimming lessons this summer.  I will also be renting out my pool on Saturday's for groups.  If you'd like to set up a family fun event let me know.  Thanks for your support.

Terri Roe
Miss Terri's Swim Programs
(909) 981-7482


6. Attention TACA SAN DIEGO MEMBERS:
      Volunteers for TACA Fundraiser in the San Diego Area:

Hello to San Diego TACA Family members and Vendors who help our children!

I am in the process of coordinating a potential TACA Fundraiser in Vista, CA. This Fundraiser will take place on Tuesday, August 9th at the Moonlight Amphitheatre. TACA will recognize some Heroes and Stars (on stage with certificates) who have helped our children, and will also watch a preview performance of the Musical "Will Rodgers’ Follies".

The reason I am writing to you is in hopes that you can donate some time to help with promoting this event in the San Diego/Orange county community. We need strong volunteers to assist with:

*Giving postcards with the details of the Fundraiser to your family, friends, and professionals (teacher, therapists, doctors, etc. who know and work with your child). If you plan to mail any out, please provide me with their address so we can apply postage.
*Possibly putting the labels on the postcard to TACA's mailing list (for families living in San Diego)
*Helping out at the theatre the evening of the performance
*Possibly make a few phone calls to select TACA vendors in the San Diego Area that you have a personal relationship with (A personal phone call is worth the time and touches the individual directly)

Also, please let me know if you would like to NOMINATE a person who has exceeded your expectations when it comes to helping your child at mandk@mindspring.com. Include their complete name, phone number and address as they will be contacted with a postcard and phone call if they will be recognized the evening of the performance.

Please let me know your availability for being a volunteer for this SAN DIEGO event by Wednesday, May 11th. You can Email me directly at mandk@mindspring.com if you are interested. Be sure to include your name, phone number and address in your email.

Thank you in advance for your help!

Karen Johnson
TACA Fundraising Committee Member, San Diego


7. New Books & Web Resources

There are so many new books and web resources, I have decided to make a section for your review. They are all worth looking at!

WEB RESOURCE #1:

WATCH THE RECOVERED AUTISTIC CHILDREN FROM THE DAN! Conference:

http://www.autism-recoveredchildren.com/

This video is well worth the 59 minutes and something you should send to family, friends, co-workers and legislators. Remind them that this video features 3 families from the TACA group.

Also from Autism Research Institute and the amazing, wonderful Dr Bernard Rimland:

1.  We recently began our second Internet webcast of a Defeat Autism Now! (DAN!) conference.  The webcast includes all of the presentations from the Defeat Autism Now! (DAN!) conference which was held last month in Boston.  The presentations can be video streamed (DSL/cable or dial-up) or downloaded onto your computer’s hard drive.  There are 25+ hours of presentations from many of the top researchers and clinicians in the field of autism, including Drs. Sidney Baker, Tim Buie, Stephanie Cave, Lisa Lewis, Jon Pangborn, Andrew Wakefield and many more.  There is no charge to view the webcast!!!  The web address is: www.DANWebcast.com

2.  The 2005 edition of the DAN! Manual, titled ‘Autism: Effective Biomedical Treatments,’ written by Drs. Jon Pangborn and Sidney Baker, has just been published.  (This book is often referred to as the DAN! Protocol.)  The cost of the 310-page book is $30.  It can be can be purchased through Amazon.com and from our website (www.AutismResearchInstitute.com).

3.  Save the Dates!  The next full DAN! conference will be held on October 28-30, 2005 in Long Beach, California.  There will be mini-DAN!s in Charlotte, NC on July 16-17 and Toronto, Canada on September 17-18.

+++++++++++++++++++++++++

If you would like additional information about autism, please write to us
at: ARI, 4182 Adams Avenue, San Diego, CA 92116, USA or send a fax
to: 619-563-6840.

LOCAL STORE RESOURCE FOR GFCF FOODS!

      • Welcome new GFCF FOOD VENDOR
        • Franks Low-Carb Marketplace- with many, many hard to find GFCF ITEMS!
        • 27001 Moulton Parkway Laguna Hills 92656 / Phone 949-831-3663

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


One day workshops for caregivers of Children with Autism Spectrum Disorders are offered by *S*P*I*R*I*T*
(Supporting Parents in Reinforcement, Intervention and Techniques) in four locations - Manhattan Beach, Pasadena, Santa Monica and Northridge.  Topics include characteristics of children with autism spectrum disorders; chronological and developmental ages; Piaget's cognitive development and Kohlberg's moral development; diagnosis, assessment and recovery; developing a family vision and plan; changes to parents behavior and approach; behavior management, functional analysis of behavior and task analysis; and other interventions.  A hosted lunch features a video of four young adults discussing growing up with autism.  The presenters, Jeanne LaPorte, R.N. and Peggy Main, L.C.S.W., have more than 30 years professional and personal experience working with individuals and families at UCLA and in private practice.  Both are parents of special needs children, one a 28-year-old with autism.  The workshop is $75 and is Regional Center vendored (vendor number PL05787.)

Dates and locations are: June 11, Pasadena and July 9, Manhattan Beach. Please contact Jeanne or Peggy at 818-749-1401 or 888-421-6121 (toll free) for more information or to reserve a space.  Flyers and brochures are available.

*S*P*I*R*I*T also does a no-charge 45-minute presentation for support groups entitled "In Praise of Parents."


Cure Autism Now Lecture Series

Cure Autism Now is meeting in the Orange County area to share our progress in the fight to find effective treatments, causes, and a cure for autism. On behalf of Cure Autism Now and the Orange County families that have already joined forces, we invite you to:

•   Hear about current autism research from Clara Lajonchere, Ph.D., Autism Genetic Resource Exchange (AGRE) Program Director
•   Learn more about Cure Autism Now programs, initiatives, and Orange County Chapter-related activities
•   Find out how you can be involved with WALK NOW Orange County 2005

Please join us to hear more about Cure Autism Now and the exciting ways you can be involved. Help make a difference in the lives of all people affected by autism.

Date:    Tuesday, May 24th, 2005
Time:   7:00 p.m. – 9:00 p.m.
Where: Huntington Beach Public Library  7111 Talbert Avenue (between Gothard and Goldenwest Streets)
Huntington Beach, CA 92648 (714) 842-4481
RSVP:  Lisa Hill at lhill@cureautismnow.org or 888-8AUTISM x38. Please reference “OC Lecture Series”.

About Clara Lajonchere, Ph.D.
Clara joined Cure Autism Now (CAN) in June, 2003 as the Program Director for the Autism Genetic Resource Exchange (AGRE).  She got her start in genetics research at McLean Hospital, a psychiatric teaching facility of Harvard Medical School, where she spent several years working on the Biological Program Project for Schizophrenia.  After obtaining a Ph.D. in Experimental Psychology from Washington University in St. Louis, Clara decided that she wanted to work more directly with children and accepted a position as the Assistant Director of Research at a non-profit children’s service agency in Southern California to help build the infrastructure for a clinical research institute.  Now as the Director of AGRE, Clara is excited to be a part of an organization whose mission it is to accelerate the pace of research in order to improve the quality of life for individuals with autism and other neurodevelopmental disorders.

About Cure Autism Now
Cure Autism Now is a non-profit organization dedicated to promoting and funding autism research and accelerating the pace of scientific progress toward effective treatments and a cure.  Cure Autism Now is one of the largest private funders of biomedical research in autism, providing more than $23 million for research grants, outreach and scientific resources since its founding in 1995.

About WALK NOW
The 2nd annual WALK NOW Orange County will take place in the fall of 2005.  Since their inception in 2003, WALK NOW events have helped the Cure Autism Now Foundation raise over $5 million to help fund autism research.


The Amazing Autism One Conference is Back! www.autismone.org – At the O’Hare Chicago Marriott

May 26-29, 2005 . Over 100 speakers – the “who’s who” in Autism with the following four tracks to choose from:

The most comprehensive conference on autism ever assembled now offers greater focus to help you address specific needs, shorten your learning curve, and bring you quickly up to speed.

Most Comprehensive
Questions and answers do not stop at the boundary of a discipline.
Multivariate in presentation and cure autism bows to the collective weight of doctors working with therapists working with educators working with parents working to recover their children.

Our children benefit from an inter-disciplinary approach. Autism One 2005 is proud to feature over 100 of the leading experts presenting in four tracks to help you make the best decisions:

1. Biomedical Treatments
2. Behavior / Communication / Education Therapies
3. Complementary and Alternative Medicine
4. Government / Legal / Personal Issues

Greater Focus
This year we are introducing a number of important changes to provide what we are calling a "lived experience." Conferences have a tendency to talk at you. That's not good enough. Real learning occurs at a deeper level; a level that combines the abstract with the practical.

Initiatives include:
1. The Mentor Program: You may request a mentor. Mentors are fellow- parents with recovered children or children well on their way to recovery.
2. Three Mini-Tracks: 1. Parents New to the diagnosis; 2. Puberty, Adolescence and Adulthood; and 3. Environmental Medicine/Issues are available.
3. Pre-Conference Day, GFCF and SCD - Culinary Delight: The Pre- Conference day is devoted to hands-on cooking to take the mystery out of gluten- casein-free, and specific carbohydrate diets.
4. Gluten/Casein free items on breakfast, lunch, and dinner menus:

Menu options will include gluten- and casein-free for breakfast, lunch, and dinner. Have a taste, it's good.

A partial list of topics, by track, include:

1. Track - Biomedical Treatments
Autoimmune factors / treatments
Biochemistry of autism
Casein- gluten-free diet
Chelation - many forms of
Dental care
Diagnosis
Enzymes
Essential fatty acids
Food / nutrition / diet / vitamins / minerals / organic foods Environmental medicine / toxins IVIG, transfer factors, IV glutathione, Neurological testing, findings, treatments, Phenol sulfur transferase deficiency, Ongoing research, Vaccinations

2. Track - Behavior / Communication / Education Therapies
Applied Behavior Analysis (ABA), Auditory Integration, Computers as learning tools, Greenspan / Floor time, Home schooling, Music therapy, Occupational Therapy, Picture Exchange Communication System (PECS), Pivotal Response Training (PVT), Psychological counseling, testing, Puberty and beyond, Relationship Development Intervention (RDI), Supra-Modal Integrative Learning Experience (SMILE), Sensory Integration, Verbal Behavior, Vision Therapy

3. Track - Complementary and Alternative Medicine
Ayurveda Medicine, Chiropractic, Detoxification, Environmental medicine, Homeopathy, Naturopathic Medicine, Hyperbaric oxygen treatment, Mother's milk, Neurofeedback, Neural organization technique, Orthomolecular Medicine, Raw milk, Specific Carbohydrate Diet (SCD), Traditional Chinese Medicine (TCM)

4. Track - Government / Legal / Personal Issues
Adolescence, Adult services, Autism - the law and you, Counseling - coping and communication for parents, Dealing with insurance companies, Estate Planning, How to be your own best advocate, Individual Evaluation Plans (IEPs), Legislative action, Obtaining government services, Puberty, School systems, Vaccines - the law and you

Autism One is a 501(3)(c), non-profit, charity organization, started by a small group of parents of children with autism. Parents are and must remain the driving force of our community, the stakes are too high and the issues too scarce to delegate to outside interests.

If you have any questions, please don't hesitate to contact me. Thank you and we'll see you in May.

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


South Orange County - Team of Advocates for Special Kids (TASK) South Orange County Workshop Schedule

Individualized Education Program (IEP) Rights and Strategies

Part 1 Saturday, May 21st 8:30 a.m. - 1 p.m.
Part 2 Saturday, June 4th 8:30 a.m. - 1 p.m.
Covers an overview of the rights and protections under IDEA, value of record keeping, the requirements of the assessment process, timelines and other legal components of an IEP, including goals and objectives. Communication techniques are interspersed throughout the workshop.

Transition to Public School

Saturday, May 28th 8:30 a.m. – 12:30 p.m.
Covers the transition to public school from an infant program to a pre-school program. Included is information on the assessment process, placement and services decisions, IEP preparations, and communication skills. Important and useful tips on how to ensure that the parent’s perspective and vision for their child is included are shared.

I.E.P. Tips and Pointers

Wednesday, June 8th 6:30 p.m. – 8:30 p.m.
Tried and true tips on how to positively advocate for your child by strengthening relationships and ensuring that your child is viewed as an individual.

South County TASK Office is located at:
South O.C. Family Resource Center
28191 Marguerite Parkway, Suite 19 , Mission Viejo
Call (949) 364-0500 x107


June 7th at 6:00 – 8:00 pm (Conference Room 3) - “How to Link Assessment to Intervention” – In this session, Dr. Lang shows attendees how to use ASD assessment findings to develop effective intervention strategies.

June 14th at 6:00 – 8:00 pm (Classroom B) - “How to Effectively Integrate School and Family Support Systems, Including Parent and Sibling Support” – In this session, Dr. Lang walks attendees through the process of effectively integrating school and family support systems to provide the most benefit to individuals with ASD.

Open to parents, family members and professionals involved in the care and treatment of children and adolescents with ASD, these information forums are the first in an ongoing series to be hosted by Beacon Day School and Huntington Beach Hospital to build greater Autism Awareness.

Limited seating. Please RSVP to Beacon Day School at 949.477.2144.


Great Plains Labs – Latest in Autism Treatments

Anaheim, CA on June 18-19, 2005. For more info: www.greatplainslaboratory.com

Saturday, June 18, 2005

  • 8:00-9:00 Registration and Exhibits
  • 9:00-10:30 Dr. William Shaw “The Importance of Biological Interventions in Autism”
  • 10:30-10:45 Break and Exhibits
  • 10:45-12:00 Lori Knowles “A Mother’s Success Story: How I Was Able to Make a Difference in My Son’s Life”
  • 12:00-1:15 Lunch and Exhibits
  • 1:15-2:45 Dr. William Shaw “The Role of Supplements in Healing Your Child”
  • 2:45-3:00 Break and Exhibits
  • 3:00-4:30 Dr. Kurt Woeller “Autistic Spectrum Disorders-The Need for a Comprehensive Approach to Health and Recovery”
  • 4:30-6:00 Dr. and Mr. David Geier: “The Link Between Vaccines and Neurodevelopmental Disorders”

Sunday, June 19, 2005

  • 8:30-9:00 Registration and Exhibits
  • 9:00-10:30 Lisa Ackerman “Support and Medical Intervention - A Parent’s Perspective”
  • 10:30-10:45 Break and Exhibits
  • 10:45-12:00 Doreen Granpeesheh “ ABA: One Piece of the Autism Puzzle”
  • 12:00-1:15 Lunch and Exhibits
  • 1:15-2:30 Dr. Rashid Buttar “Chelating Heavy Metals With DMPS”
  • 2:30-2:45 Break and Exhibits
  • 2:45-4:15 Kelly Dorfman “Sensory Nutrigation-How Nutrition Affects Sensory Development and Sensory Issues Affect Eating”
  • 4:15 - 6:00 Q & A Panel

To register online https://secure.hostdepot.com/11/498/conference/anaheim/register.asp


Area Board XI  State Council on Developmental Disabilities of  Orange County

Presents: Parent Empowerment! Hosted by Whittier Law School

A Special Panel of Attorneys; Rene Folse, Valerie Vanneman, Lillian Meredith, Jane Dubovy, Sholeh Iravantchi and others will speak on Orange County's  SPECIAL EDUCATION ISSUES

A few Parent Topics:

    • IDEA and the  Re Authorization
    • Current Issues  & Information
    • ”What Parents will be faced with in Special Education today"
    • " How to be pro active and empowered in your IEP"
    • Overview of Special Ed  and the Law
    • Parent Question & Answers

Date: June 18, 2005 Saturday

Time:   10:00am to 1:00pm

Location: Whittier Law School, 3333 Harbor Blvd. Costa Mesa

Translation will be provided.

For more information, Contact Area Board XI 714-558-4404 or Andrea Kumetz-Coleman 714-893-5065


The SURFERS HEALING SURFCAMP dates are posted on our website www.surfershealing.org . Please fill out application and e-mail it to jennifer@surfershealing.org or fax it to 949-728-1200. Thanks and we can't wait for summer.


DEFEAT AUTISM NOW!: October 2005 Long Beach –OR- Los Angeles conferences. The web conference also includes the Recovered Autistic Children event.  To learn more about the DAN! web conference and to subscribe, visit: www.ARIWebConference.com or www.danconference.com


9. Personal Note

Each week I get to meet, talk to and email with hundreds of families. Email has been the most popular (and quickest) form of communication with almost 400 going out a week.

Many of these emails have a similar question or need. What I wanted to share with you in this TACA e-news is some new articles on the TACA web site and direct links to the Autism One Radio program that I host. Often families ask me very detailed questions on how they can help their child. While I am not a doctor or a credentialed professional, I will almost always have an opinion on a topic. And if I have tried anything with Jeff – I am always willing to share my point of view and experiences with one child.

Outlined for you are a listing of the most requested articles and radio show links. Please check out these different topics based on your needs.

Articles featured on www.tacanow.org

Got a topic you need help on? Here are some of the top requests:

Radio Show (30 minutes via www.autismone.org)

Don’t want to read? Just listen! Take 30 minutes and hear the following topics:

And from Friday’s interview -- Lauren’s amazing thoughts on being a sibling to someone you love and affected by autism

I truly hope this information helps you and your loved ones. I look forward to giving you a Jeff update in the next TACA e-news. Until then – take care and thank you for all your help making TACA such a wonderful organization.

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 TACAís. 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.

P.S. TACA e-news is now sent to 1,730 people!
(This number represents families ñ 95%, and the rest are professionals.)