Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for August 2003 #1. 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.
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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 Southern California Autism support called TACA.
We focus on parent support, parent mentoring, gluten / casein free diets, the latest in medical research, special education law, reviews of the latest treatments, and many other topics as it relates to Autism. Our main goal is to build our community so we can connect, share and support each other.
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.
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TACA has an official web site at www.talkaboutcuringautism.org
ALL CORRESPONDENCE needs to be directed to contact us
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In this edition of TACA e-news:
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1) Next TACA COSTA MESA support group meeting:
Date: Saturday, September 13, 2003 (always the 2nd Saturday of each month)
Time: 2:30 - 5:30
TOPIC: Gluten Free / Casein Free & Organic Cooking Class
See Item #9 of this newsletter for more details
NOTE: RSVP’s ARE REQUIRED!!
PLACE:
LOCATION CHANGE FOR THIS MEETING ONLY!
Bloomingdales Fashion Island, Newport Beach
Home Store – 3rd floor above Atrium Court
(Please do not contact the Bloomingdales for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.)
CONTACT PHONE FOR DAYS OF THE MEETING ONLY: 949.678.9010
Please do NOT use the cell contact for days outside of the meetings.Thank you!
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2) UPCOMING TACA Costa Mesa Meeting Schedule:
October 11, 2003
Beginner Medical
Intervention For Autism – a beginners course
presentation by a new Southern California DAN! / ICDRC Doctor
November 8, 2003 Mainstreaming High Function ASD
Kids - Jessica Postil –
Autism Spectrum
Consultants
December 13, 2003 School District Roundtable -
The meeting will start with a general announcement about the state of local school districts. Then each school district or general area will break out into separate groups to discuss general information, share IEP’s and strategies.
Note: This meeting is for PARENTS ONLY!
January 10, 2004: Big Fun Gymnastics – Occupational Therapy for ASD Kids
Gene Hurwin
Much more is being planned for 2004! Stay tuned!
Note: How do topics get selected for TACA MEETINGS? Each location frequently does a formal or informal survey of attendee’s by the meeting coordinator. Based on the meeting attendee’s requests, topics are then selected and speakers are scheduled. Is there a topic you are interested in hearing? Please forward a note to Lisa at contact us. We want to make sure the meetings are informative and topical based on the group’s needs. If you have a suggestion, we would like to hear from you!
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TACA has FIVE So. California meeting locations:
1) Costa Mesa: 2nd Saturday of each month (info in item #1 for meeting subjects and details.)
2) West Hills (the valley man!): the 1st Sunday of every month, on the Cal State University Northridge Campus in the Early Intervention Psych Clinic... - Info: Contact Us
3) San Diego: 4th Tuesday evening – 6:30- 8:00pm – Info: Contact Us
4) Corona: 3rd Saturday – 1:30pm – 4:30pm – for more info: NEW LOCATION!!! EMAIL FOR MORE INFO AT: Contact us - Topics for the TACA Corona location are:
· Saturday,
August 16th (1:30pm-4:30pm)
Christine Little-Educational Advocate (in Riverside)
Ralph Peters from Law firm Anderson & Kreiger in Temecula regarding
Vaccination Litigation
· Saturday,
September 20th (1:30pm-4:30pm)
Dr. Kurt Woeller from San Diego (DAN! Doctor) to speak regarding DAN! protocol and biomedical interventions
· Saturday,
October 25th(1:30pm-4:30pm)
Jack & Christina Anthony (Legal Advocacy Firm)
· Saturday,
November 15th (1:30pm-4:30pm)
The wonderful Lisa Ackerman (Interventions that worked for my child)-This will
be presentation that was given at Great Plains
Conference for those of you that missed it
5) Torrance: 3rd Monday of each month at Whole Foods Market on PCH In Torrance – 6:30-9:00pm. Info: Contact Us
Monday, August 18th
Rapid Prompting Method by a parent from the Carousel School by
parent, Carolyn Doherty
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3) General News:
How does Autism & Aspergers Effect Families:
This has to be the best article I have read on the psychological impact to families with autism
http://www.nas.org.uk/pubs/factsheet/docs/impact.pdf
This is an excerpt:
Children
In contrast
to other types of disabilities, parents of children with autism appear to be at
greater risk for depression, anxiety, social isolation, fatigue and frustration
in obtaining accurate diagnoses and services. Indeed, Bouma and Schweitzer
(1990) found autism to contribute more to family stress than did cystic
fibrosis. Individuals with autism frequently engage in behaviours that are potentially
disruptive to family life such as aggression, self-injury, impulsivity,
hyperactivity, temper tantrums and obsessional ritualistic
behaviour. Studies by Kaminsky and Dewey (2002); Sharpley, Bitsika and
Efremidis (1997) and Gray (1993) emphasise the most important factors in
parenting a child with autism:
1. The long
and frustrating process of obtaining a disorder:
2. The permanency of autism
3. The lack of public knowledge of autism (although this is improving)
4. The lack of acceptance of autistic behaviour by society and sometimes family
members
5. Very low levels of social support
6. Extremely disruptive antisocial behaviour - One study (Sharpley, Bitsika and
Efremidis, 1997) found that 81.9% of parents reported that they were sometimes
stretched beyond their limits, and nearly half of these felt that way monthly
or even weekly.
The lack of
suitable respite care adds to this stress. Barson (1998) found that a third of
families did not have any respite support at all, and of those who did, 28% were
not satisfied with it. Obtaining respite care during school holidays is
particularly difficult, with autism specific respite services being uncommon
(Loynes, 2000). Sharpley, Bitsika and Efremidis (1997) found no significant
difference between parental-well-being according to the relationship parents
had with the immediate family who helped out with the child with autism.
However, there was a relationship according to the level of understanding which
parents felt their relatives had of the child’s problems.
Loynes (2000) looked at the financial impact of having a child with autism and
found it to be a significant burden to families. There is not only ashortfall
between the costs of bringing up a child with severe disabilities and benefits
received, but caring for a person with autism or Asperger syndrome commonly
impacts on the career in their ability to work. Anecdotal evidence shows that a
significant proportion of families of children with autism are reliant on
benefits, having given up their employment due to the demands of caring for
their child. However, Broach et al (2003) show clearly that those benefits
designed to cover the additional costs of caring for a child with autism did
not meet these financial needs.
Adolescents In adolescence, many families recognise that their child’s level of functioning or capacity for independence may not change dramatically in the years ahead. Indeed, whereas for other families adolescence is a time of increased independence and autonomy, for parents of adolescents with autism, family relationships may worsen (Seltzer et al, 2001). Young people with Asperger syndrome are particularly vulnerable to mental health problems, and this can be difficult for all concerned. Depression in young people with Asperger syndrome may be related to a growing awareness of their disability or a sense of being different from their peer group and/or an inability to form relationships or take part in social activities successfully. Personal accounts by young people with Asperger syndrome frequently refer to attempts to make friends. As one young man said: “I just did not know the rules of what you were or were not supposed to do… I also did not know how to approach girls and ask them to go out with me. I would just walk up and talk to them, whether they wanted to talk to me or not. Some accused me of harassment, but I thought that was the way everybody did that.” Bovee (200?) Indeed, some people have even been accused of harassment in their attempts to socialise, something that can only add to their depression and anxiety.
Adults There is very little research into the impact of lifelong caring of a person with autism (Seltzer etal, 2001).Reasons for this include the facts that autism did not begin to be fully recognised until the 1960s and the first group of children to be diagnosed were those with the severest form of autism, many of whom went into residential care. Other children who may have had autism were given other diagnostic labels and therefore were not identified for follow-up studies. Seltzer et al (2001) reviewed studies on adults and concluded that although most individuals diagnosed with autism in childhood continue to manifest the core deficits of autism in adulthood, the symptoms of autism become less severe over time, and the best outcomes are found for those with higher IQ scores and more advanced language ability. They go on to say that these patterns have important implications for the family. Although they face life-long caregiving responsibilities, the challenges of parenting an adult with autism are stressful in different ways, compared with when their son or daughter was a young child or adolescent.
However, this is not the same for the careers of adults with more severe autism
and learning disabilities. Krauss and Seltzer (1999) carried out a longitudinal
study on families in which the adult had a diagnosis of autism and learning
disabilities. These families were amongst the first to have their child
diagnosed with autism. They were compared to families with an adult with Down
syndrome, matched for gender and age. It was found that the adults with autism
had more behaviour problems which in turn put caregiving mothers at risk of
higher levels of psychological distress (Krauss and Seltzer, 1999). They were
more likely to see themselves as “walking on egg shells” around their adult
child than those with Down syndrome. The authors do, however, caution that
their findings are highly tentative and, at best, give avenues for further
investigation.
One interesting result the study found was that,whereas the social and
psychological well-being of mothers of young children with autism was
significantly different from mothers of young children with Down syndrome, this
was not the case for those with adult children. Although this might be due to
the small sample size or the fact that both groups had learning disabilities
and were therefore similar, the authors suggest that social and psychological
stress reduces among mothers of adults with autism after decades of caregiving.
Over time, mothers of autism became used to caring for someone with autism and
there were no differences between them and mothers of an adult with Down
syndrome. Further research is therefore required.
There is a tremendous amount of stress placed on the parents of adults with
autism who may, in addition, have the additional caring role for their own
ageing parents. Another major issue is the planning of future care for their
son or daughter. This is in addition to caring for a person who may show
challenging behaviours and other needs. On the more positive side, there is
emerging evidence that some cardinal manifestations of autism, such as
obsessive behaviours, social unresponsiveness and communication difficulties,
reduce in some individuals as they grow older, which is cause for optimism in
these families (Seltzer, 2001).
California Budget Crisis Update
Minor Reduction to
Special Ed Dispute Resolution - But Fiscal Crisis Remains
GOV Signs Budget - Makes $1
Million In Additional Cuts
Governor Gray Davis
signed today the 2003-2004 state budget, officially giving California a
spending plan 33 days late, though the fiscal crisis remains, with an $8
billion deficit already projected for next year. As expected, the embattled
governor, facing an historic recall, made only minor additional reductions and
changes to the budget, using his line item veto (or "blue pencil")
authority, totaling about $1 million. None of those additional reductions
impacted people with developmental, cognitive or other disabilities, or seniors
with the exception of a minor reduction of $123,000 for special education
dispute resolution, mediation and fair hearing programs.
Not included in the the total of $1 million in additional reductions, are
several reductions (none in the Departments of Developmental Services,
Rehabilitation or Social Services) that the Governor claimed were
"technical corrections" or "adjustments" - essentially
correcting drafting errors in the budget bill that did not correspond to
actions taken by the Legislature. None of these reductions had any impact to
Medi-Cal, SSI/SSP or other community-based services and supports for people
with developmental, cognitive and other disabilities.
Davis will take action on a package of several other bills that are linked to
the budget bill (referred to as budget "trailer" bills because they
follow or trail the budget) over the next week.
Summary of line item vetoes made by Gov Davis today in the budget bill of
interest to people with disabilities
The governor made the following additional reductions or changes to the budget
bill that are of interest or have some level of impact - mostly none - to
people with developmental, cognitive or other disabilities. Please note
that all these changes are either technical (corrects a drafting error) or
minor (in terms of dollar amount or impact on program): Department: Education
(special education dispute resolution program) Budget item:
6110-001-0890 Provision 9 from this budget
line item in the budget bill relates to a legislative appropriation that
totaled $10,263,000 for dispute resolution services, including mediation and
fair hearing services, provided through contract for the Special Education
Program.
The Governor reduced support (line item vetoed) from $129,929,000 to $129,304,000
and revised Provisions 9 and 24 [Provision 24 relates to support for the
Ravenswood City School Improvement Program, which does not directly impact
people with disabilities]. The Governor claimed that the reduction of $123,000
eliminates only the amount for salary increases for contracted employees.
The Governor wrote that "..."As the Budget provides for no
augmentations for state employees, I believe it would be inequitable to fund
salary increases for contracted employees. With this reduction, $10,140,000
remains available for dispute resolution services. I am revising Provision 9 to
conform to this action.”
No direct effect to People With Developmental, Cognitive and other disabilities
and should not have any significant impact to dispute resolution, mediation or
fair hearing services.
Next UCP
Report
Details on all the
reductions made to health and human service related programs and services
impacting people with developmental, cognitive and other disabilities -
including further details on specific impact of the cut to the Secretary of the
Health and Human Service Agency budget, and other departments including
Department of Rehabilitation, Office of Criminal Justice Planning and
elimination of state support for a program related to training and outreach
regarding people with disabilities who are victims of crime or abuse, will be
reported in the next CA UCP Capitol Report on Sunday (August 3). That report
will be a final summary of all reductions, cuts and other changes impacting
people with developmental, cognitive and other disabilities.
Next Steps
SENATE: the Senate passed the budget on Sunday evening (7/27) and adjourned
just after 9 PM on July 29 (Sunday) for their summer recess, and will not
return to Sacramento until August 18, Monday afternoon.
ASSEMBLY: The Assembly, passed the budget 56-22 (as approved by the Senate)
after a record-setting marathon legislative session of over 28 hours, on
Tuesday (July 29). The Assembly adjourned for their summer recess and will not
return until August 18, Monday afternoon. There still are about 2 budget
related bills that the Assembly introduced and passed that will need approval
by the Senate in August, before going to the Governor. Those bills have no
impact to people with developmental and other disabilities.
GOVERNOR: Governor will sign other legislation linked to the budget bill
(referred to as "budget trailer bills) over the next several days.
For More Information About This Report
This is a report for Californians with developmental (& other disabilities),
families, providers and other advocates, from the California Coalition of
United Cerebral Palsy Associations, a link to the California Community Advocacy
Network.
If you would like to get on this distribution please send an email with that
request to: martyomoto@rcip.com. Sharing information is part of our
organizing effort. Please feel free to forward or copy this (attribution is
nice). We're all in this together! Marty Omoto, advocate/brother of Alana,
sister with developmental disabilities CA Coalition of United Cerebral Palsy
Associations 1225 8th Street Suite 480 Sacramento, CA 95814 916/446-0013
(NEW phone number!) NEW fax number: 916/446-0026 email:
martyomoto@rcip.com Save the date: August 20th Lanterman unified action
meeting - the whole world is watching!
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4) Vaccine News
UPI Investigates: The vaccine conflict By Mark Benjamin Investigations Editor - Published 7/20/2003
WASHINGTON, July 20 (UPI) -- The screaming started four hours after 8-month-old Chaise Irons received a vaccination against rotavirus, recommended in June 1998 by the Centers for Disease Control and Prevention for every infant to prevent serious diarrhea.
Within a day he was vomiting and eliminating blood. Doctors performed emergency surgery, saving him by repairing his intestines, which were folding in on one another. A doctor later figured out the vaccine caused Chaise's problem.
In October 1999, after 15 reports of such incidents, the CDC withdrew its recommendation for the vaccination -- not because of the problem, the agency claims, but because bad publicity might give vaccines in general a bad name.
But a four-month investigation by United Press International found a pattern of serious problems linked to vaccines recommended by the CDC --and a web of close ties between the agency and the companies that make vaccines.
Critics say those ties are an unholy alliance in a war against disease where vaccine side effects have damaged, hurt or killed people, mostly children.
"The CDC is a disgrace. It is a corrupt organization," said Stephen A. Sheller, a Philadelphia attorney who has sued vaccine makers for what he says were bad vaccines. "The drug companies have them on their payroll."The CDC, based in Atlanta, said it is committed to fighting disease and balancing vaccine side effects.
"Our goal is to protect the public health from both disease and from serious adverse events," said Dr. Walter Orenstein, director of the CDC's National Immunization Program. The agency sets the U.S. childhood immunization schedule, or the list of shots pediatricians give children. Some states say kids can't go to public school unless they have had CDC-endorsed vaccines.
Since the mid-1980s the agency has doubled the number of vaccines children get, up to nearly 40 doses before age 2. The CDC also tracks possible side effects, along with the Food and Drug Administration. This puts the agency in the awkward position of evaluating the safety of its own recommendations.
An advisory committee of outside experts helps the CDC make vaccine recommendations. UPI found:
-- In two cases in the past four years, vaccines endorsed by the CDC were pulled off the market after a number of infants and adults appear to have suffered devastating side effects, and some died. Critics now worry about a possible link between vaccines and autism, diabetes, asthma and sudden infant death syndrome, among other ailments.
-- Members of the CDC's Vaccine Advisory Committee get money from vaccine manufacturers. Relationships have included: sharing a vaccine patent; owning stock in a vaccine company; payments for research; getting money to monitor manufacturer vaccine tests; and funding academic departments.
-- The CDC is in the vaccine business. Under a 1980 law, the CDC currently has 28 licensing agreements with companies and one university for vaccines or vaccine-related products. It has eight ongoing projects to collaborate on new vaccines.
The situation, while legal, gives critics plenty of reason to worry that
vaccine side effects are worse than CDC officials say.
"When you take a look at the ever-increasing numbers of doses of vaccines babies have gotten over the past two decades and you see this corresponding rise in chronic disease and disability in our children, it is out of control," said Barbara Loe Fisher, president of the National Vaccine Information Center, which does not accept money from vaccine manufacturers.
She worries that vaccines might be linked to ballooning rates of chronic illness like autism, which has increased tenfold since the mid-1980s, and asthma, which has more than doubled since 1980.
Fisher's group wants to overhaul the mass vaccination system."The CDC has a very hard time investigating in an unbiased way what is happening to our children because of ideological and financial conflicts of interest," she said. Fisher believes a vaccine injured her son in the 1980s.
Developing a vaccine can cost a half a billion dollars. A recommendation by the CDC guarantees a market and a 1986 law limits manufacturers' liability for side effects.
The annual global market for vaccines is expected to go from $6 billiontoday to $10 billion by 2006. The CDC said the best vaccine advisers often have ties to the industry, making potential conflicts unavoidable. Agency officials review possible conflicts.
"The issue of safety is critical and you need people extremely knowledgeable about safety to develop the best policy formulations," said Orenstein. The agency has to weigh possible side effects against dangerous disease. "We need to put safety data in context with risk-of-disease data," he said.
The agency said ethics officials also review partnerships with companies to make new vaccines."Each one of those proposed activities is reviewed by the CDC's ethics officials, by our office of general counsel, and by me to make sure that there are no conflicts of interest," said Dixie Snider, CDC associate director for science.
Andrew Watkins, director of the CDC's Technology Transfer Office, negotiates licensing agreements with outside companies. He said agency scientists routinely leave to work with vaccine manufacturers. "It does happen that some of our inventors end up working for a manufacturer," Watkins said. "In fact, we consider that a wonderful tool of technology transfer, although we do lose a good scientist."
But Watkins said very little money actually changes hands, making it unlikely to influence the CDC. He said companies, including vaccine makers, only gave the CDC around $1 million last year to work on collaborative projects and the agency only got $150,000 last year in licensing fees.
"We are a real cheap date," Watkins said.
Rep. Dan Burton, R-Ind., who has been investigating vaccines for four years, said conflicts at the CDC are a problem, particularly on the vaccine advisory panel. He believes vaccines triggered his grandson's autism.
"This presents a real paradox when the CDC routinely allows scientists with blatant conflicts of interest to serve on influential advisory committees that make recommendations on new vaccines, as well as policy matters," Burton told UPI. "All the while these same scientists have financial ties, academic affiliations, and other vested interests in the products and companies for which they are supposed to be providing unbiased oversight."
Because of concern over vaccine side effects, Congress in 1986 passed a law setting up a database at the CDC to track reports from doctors, manufacturers and the public of possible side effects from vaccines that started in 1991.
As of the end of last year, the system contained 244,424 total reports of possible reactions to vaccines, including 99,145 emergency room visits, 5,149 life-threatening reactions, 27,925 hospitalizations, 5,775 disabilities, and 5,309 deaths, according to data compiled by Dr. Mark Geier, a vaccine researcher in Silver Spring, Md. The data represents roughly 1 billion doses of vaccines, according to Geier.
The reports do not necessarily show that a vaccine caused a problem.
The pain of Rotashield
The CDC's Advisory Committee on Immunization Practices, ACIP, helps the agency decide what vaccines are safe enough to recommend. It is made up of 12 experts from hospitals, universities and state health departments.
In June 1998, the committee recommended that all infants be vaccinated against rotavirus. The virus causes bad diarrhea that can be fatal.
At the time, vaccine maker Wyeth had a vaccine called Rotashield. Merck hoped to soon follow with its own version. Wyeth ended up pulling its vaccine off the U.S. market in October 1999 after it was suspected of causing an excruciating contortion where a child's large intestine folds over the small one.
Emergency surgery is sometimes required to prevent death. That was the case with 8-month-old Chaise Irons. "Chaise was vomiting blood and blood was coming out of his stool," said his mother, Jayne Irons, from her home in Malibu, Calif. Doctors performed emergency surgery to repair Chaise's intestines, saving his life.
Jayne said she never questioned her doctor's advice to give Chaise the vaccine. "I had no reason to doubt anybody. I am such a believer in vaccinations," Irons said.
The Irons' will get $25,000 for Chaise's injuries from a government compensation program.
For Rotashield, the CDC's public database contains 664 total reports possibly caused by the vaccine, including 288 emergency room visits, 63 life-threatening reactions, 232 hospitalizations, 10 disabilities and eight deaths.
"Eight deaths," said Jayne Irons. "You just have to thank God that you are not one of the deaths."
Republican staff on the House Government Reform Committee looked into the CDC panel that recommended the vaccination. Their August 2001 report found that "four out of eight CDC advisory committee members who voted to approve guidelines for the rotavirus vaccine in June 1998 had financial ties to pharmaceutical companies that were developing different versions of the vaccine."
A transcript from that June 1998 meeting shows the committee voted down an effort by one member to phase in the vaccine because of concern over possible bad side effects. "I'm still a little concerned about the safety issues," Marie Griffin from Vanderbilt University said before that vote.
When asked, members of the committee told UPI their potential conflicts do not affect their judgment. "I am probably just the kind of person you are talking about," said Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia, who was a committee member until last month. At the same time, he shared a patent for another rotavirus vaccine. Merck has funded Offit's research for 13 years.
"I am a co-holder of a patent for a (rotavirus) vaccine. If this vaccine were to become a routinely recommended vaccine, I would make money off of that," Offit said. "When I review safety data, am I biased? That answer is really easy: absolutely not."
"Is there an unholy alliance between the people who make recommendations about vaccines and the vaccine manufacturers? The answer is no."
Merck bought and delivers copies of Offit's book, "What Every Parent Should Know About Vaccines," to American doctors. The book has a list price of $14.95. "Merck Vaccine Division is pleased to present you with a copy of the recent publication, 'What Every Parent Should Know About Vaccines,'" says a Dear Doctor letter from Merck. "The authors designed the book to answer questions parents have about vaccines and to dispel misinformation about vaccines that sometimes appears in the public media."
Offit said he does not know how many copies of his book Merck purchased. "I don't have any control over that," he said.
The 2001 Government Reform Committee's investigation noted potential conflicts with another committee member. The chairman of the CDC's Vaccine Advisory Committee, Dartmouth Medical School Professor Dr. John Modlin, owned $26,000 in Merck stock.
In a telephone interview with UPI, Modlin said he had sold that stock, but that he had recently agreed to chair a committee to oversee Merck vaccine clinical trials. Modlin, who was the committee chairman until last month, said he does not know how much compensation he receives from that post, but that Merck "pays my expenses" to attend meetings.
In October 1999, the committee reversed its recommendation that all infants should get rotavirus vaccinations. Modlin said the vaccine was safe enough, but the committee reversed itself out of concern that bad press over Rotashield might make some people stop getting vaccinated altogether.
"There could be some spill-over effects that would have a net negative effect," Modlin said. "I thought that was the committee's finest hour." Meeting transcripts over the past decade showed that at some meetings, half of the members present had potential conflicts with vaccine manufacturers. The CDC said that in October 2002 it adopted new guidelines for participating on that advisory committee that in the future will preclude people with conflicts like Offit's from sitting on the committee.
"We learned from that experience (with rotavirus) and have now put in force more stringent criteria recently so we do not nominate people with those kinds of conflicts," said the CDC's Snider. At the June 2002 committee meeting -- the last meeting for which minutes are available -- four of the 11 members present acknowledged conflicts with Wyeth, GlaxoSmithKline, Merck, Pfizer, Bayer and Aventis Pasteur. Two of the four did research or vaccine trials for manufacturers. One of the four was a co-holder of a vaccine patent as well as a consultant to Merck.
At odds over autism
At 8:05 a.m. on Monday, July 16, 2001, a vaccine safety committee of the influential Institute of Medicine convened a public meeting at the Charles Hotel in Cambridge, Mass. The purpose: to discuss whether CDC-recommended vaccines might be responsible for a wave of autism and neurological problems in tens of thousands of American children during the 1990s.
The concern: most vaccines contained a mercury-based preservative called thimerosal. Too much mercury has known toxic effects on the brain. Since the mid 1980s, the number of childhood vaccinations recommended by the CDC had nearly doubled. The agency recommends nearly 40 doses of vaccines for children today. Also since the mid-1980s the autism rate in the United States had soared by 10 times to an astonishing one child in every 300.
Cause and effect or coincidence?
The vaccine manufacturers deny any connection, but the Institute of Medicine -- part of the National Academy of Sciences and a key adviser to the federal government on medical concerns -- wanted to hear from Dr.Thomas Verstraeten, a CDC expert on the issue. When Verstraeten appeared before the committee, he made a surprise opening statement. "First, I should mention that as of 8 a.m. European time I have been employed by a vaccine manufacturer," Verstraeten told the panel, according to a transcript. "That means since 2 a.m. American time," just hours before he spoke on behalf of the CDC.
Verstraeten had been working at the CDC on a study of 76,659 children to determine if thimerosal might be causing neurological problems like autism.
Signs of autism usually show up around age 2. Sometimes children who had previously appeared to interact normally will suddenly regress, become withdrawn and stop responding to their parents and the outside world. They may perform repetitive motions, like spinning or flapping their arms, have seizures, scream uncontrollably and resist physical touch.
Manufacturers had used thimerosal, which contains ethyl-mercury, as a preservative in multi-dose vials of vaccine. The vials allow needles to be inserted repeatedly and the vaccine drawn out. The vials are cheaper
than packaging doses of vaccine separately, without thimerosal.
Depending on what vaccines a child got during that period, a visit to the doctor during the 1990's may have exposed some children to 125 times the limit on mercury set by the Environmental Protection Agency.
A February 2000 draft of Verstraeten's study, obtained by United Press International, appears to show that thimerosal might cause brain problems.
That draft cites "increasing risks of neurological developmental disorders with increasing cumulative exposure to thimerosal."
"We can state that this analysis does not rule out that receipt of thimerosal-containing vaccine in children under 3 months of age may be related to an increased risk of neurologic developmental disorders," the
study said. To discuss the findings in Verstraeten's study, the CDC convened a meeting at the Simpsonwood Retreat Center in Norcross, Ga., on June 7-8,2000. The agency invited vaccine experts and representatives of four vaccine manufacturers.
After discussing that study, Dr. David Johnson, a Michigan state Public health officer advising the CDC on vaccines, said that the findings were troubling, according to a transcript.
"My gut feeling? It worries me enough," said Johnson. "I do not want (my) grandson to get a thimerosal-containing vaccine until we know better what is going on."
Later in the same conversation, CDC officials agreed to keep the study private. "We have been privileged so far that given the sensitivity of information, we have been able to manage to keep it out of, let's say,less responsible hands," said Bob Chen, head of CDC's Vaccine Safety and Development unit.
Dr. Roger Bernier, who was then CDC's associate director for science, responded, "I think if we will all just consider this embargoed information, if I can use that term."
The CDC's Walter Orenstein said the agency wanted to look hard at the study before discussing it in public, not cover it up. The CDC never published a study based on the data, but said it would soon.
GlaxoSmithKline declined UPI's request to interview Verstraeten from Rixensart, Belgium, but Orenstein said Verstraeten left the CDC to move
back to Europe.
For Lara Bono of Durham, N.C., the connection between vaccines with thimerosal and her son's autism is obvious. Bono said her son Jackson began to change drastically within days of receiving a group of thimerosal-containing vaccinations. Bono says that on Aug. 14, 1990, four days after receiving the last of a group of shots, 16-month-old Jackson was becoming withdrawn. Within two weeks he stopped responding or acknowledging his parents. Two weeks after that Jackson no longer would make eye contact. It soon became difficult to get Jackson to eat or sleep. He has had bouts of spinning uncontrollably and seizures.
"Fast forward another couple of months and he was gone. The mercury was in his brain," Bono said. Years later, Bono discovered that at one point, Jackson's mercury exposure may have been more than 40 times the limit set by the EPA. Nine years later, Bono says, Jackson was diagnosed with mercury poisoning she says came from the vaccines.
Boyd Haley, chairman of the Chemistry Department at the University of Kentucky, has done studies that he says show some children with autism do not excrete harmful mercury from vaccines, but keep it in their bodies. He says the CDC knows the vaccines the agency recommended may have harmed a generation of children.
"I know that they know and that is what bothers me more than anything else," Haley said. "You can't do a study showing it (thimerosal) is safe. It is just too damn toxic." In June of 2000, the agency's Vaccine Advisory Committee signed on to a statement calling for the removal of thimerosal from vaccines "because any potential risk from mercury is of concern." "However, there remains no convincing evidence of harm caused by low levels of thimerosal in vaccines," the statement said.
In October 2001, the Institute of Medicine panel that heard from Verstraeten found that it is "biologically plausible" that thimerosal causes autism, but that, "current scientific evidence neither proves nor disproves a link."
To avoid any conflict of interest, that panel specifically excludes "anyone who had participated in research on vaccine safety, received funding from vaccine manufacturers or their parent companies, or served on Vaccine Advisory Committees."
Laid low by Lyme vaccine
The rotavirus recommendation is not the only controversial call made by the CDC. Another involves a vaccine to fight Lyme disease, a tick- borne illness that can cause profound fatigue, headache, fever and severe muscle pain.
"It was after the booster shot that I absolutely collapsed," said Lewis Bull, a farmer from East Lyme, Conn. Bull, now 49, volunteered in 1996 to take shots during a clinical study for a new vaccine to prevent Lyme disease developed by SmithKline Beecham, now GlaxoSmithKline. Clinical studies are tests on humans to make sure vaccines are safe and work before going on the market.
In the study, Bull first received placebo shots containing no vaccine and felt fine. But soon after his second shot of the real vaccine he began to suffer from debilitating arthritis, memory loss and fatigue. Some doctors believe the Lyme vaccine side effects mirror the disease itself. "For the first six months I could not get out of bed. The memory loss was incredible. I've played guitar all my life and I could not remember how to play guitar. I could not find the town hall and I used to go there four times a week," he said in a recent telephone interview. Bull said his fatigue was so severe he would sleep for stretches of 22 hours or more. Without medical insurance, Bull was forced to sell his farm.
On Feb. 18, 1999, the CDC endorsed Lyme disease vaccine for people age 15-70 who work or recreate in possible tick-infested areas. By October of 2000, more than 1.4 million people had received the vaccine, according to the CDC. But 19 months later, in February 2002, SmithKline Beecham pulled the vaccine off the market because "sales of LYMERIX are insufficient to justify the continued investment." The company also faced hundreds lawsuits by people who said they suffered side effects, many similar to Lewis Bull's. Although he never sued, Bull said he complained to the CDC to report what he says were obvious side effects from the vaccine, called LYMERIX.
The government's database of possible side effects for LYMERIX lists 640 emergency room visits, 34 life-threatening reactions, 77 hospitalizations, 198 disabilities and six deaths after people took the shots since the CDC endorsed it.
According to CDC meeting transcripts where the advisory committee weighed its recommendation, five of 10 committee members disclosed their financial conflicts of interest with vaccine manufactures. Three of the five had conflicts of interest with SmithKlineBeecham.
The committee ignored a plea from a consumer advocate to delay a recommendation on LYMERIX because it might not be safe, according to a February 1999 transcript. “We are just saying there is a wealth of information out there that is different than the information you have been provided. I think the honorable thing to do would be to wait," said Karen Vanderhoof-Forschner, founder of the Lyme Disease Foundation, a patient's advocacy group that eventually opposed the vaccine.
UPI found that the CDC and SmithKline Beecham worked together on a Lyme vaccine. A 1992 CDC activity report obtained by UPI says the agency had an agreement "with SmithKline Beecham that currently funds three positions at (the CDC) for the purpose of providing information of use in developing advanced test methods and vaccine candidates."
In June 2001, the General Accounting Office delivered a report to Sen. Chris Dodd, D-Conn., on this issue. It says that CDC employees "are listed on two Lyme-disease related patents" including "a 1993 joint patent between CDC and SmithKline Beecham Corporation." The report also said that six of 12 consultants working for the CDC on Lyme vaccines "reported at least one interest related to a vaccine firm."
Do babies need Hep B?
In 1991 the CDC recommended that all infants get their first Hepatitis B vaccination just hours after birth. The disease is mostly spread from dirty needles and unprotected sex. It can create deadly liver disease. The vaccine has been blamed for mysterious deaths following the shots, sometimes filed as sudden infant death syndrome. One is the Sept. 16, 1998, death of Lyla Rose Belkin at age 5 weeks. She died 15 hours after getting her second Hepatitis B vaccine booster shot.
Michael Belkin said in a telephone interview from Seattle that his daughter was lively and alert prior to receiving the shot. She became agitated and noisy, suddenly fell asleep, and died 15 hours later. Belkin said the coroner indicated that his daughter's brain was swollen; a reaction some researchers believe could be caused by the vaccine.
"So in the CDC and (the Vaccine Advisory Committee's) own words, almost every newborn U.S. baby is now greeted on its entry into the world by a vaccine injection against a sexually transmitted disease for which the baby is not at risk -- because they couldn't get the junkies, prostitutes, homosexuals and promiscuous heterosexuals to take the vaccine," Belkin told a congressional panel on May 18, 1999.
"Parents need to understand that the system providing the vaccines injected into their children's veins is corrupt and scientifically flawed," Belkin told UPI. "Parents should do their own homework and investigate this question: What is the risk of getting a severe neurological vaccine adverse reaction versus the risk of getting neurological complications from the disease?"
The CDC's files contain 32,731 total reports of possible reactions following Hepatitis B vaccinations since 1991, including 10,915 emergency room visits, 685 life-threatening reactions, 3,700 hospitalizations, 1,200 disabilities and 618 deaths.
In October 2002, the Institute of Medicine reported that the "evidence is inadequate" to prove or disprove that some vaccines might be behind some cases of SIDS, and called for more research.
The CDC says, "There is no confirmed evidence which indicates that hepatitis B vaccine can cause chronic illnesses."
Some of the officials involved in the agency's 1991 decision to recommend that all infants receive the Hepatitis B vaccine also had close ties to vaccine manufacturers.
Dr. Sam Katz was the advisory committee chairman at the time. A professor at Duke, Katz said 30 percent of children who get the disease get it from unknown causes, possibly in daycare.
He said the CDC tried to give the shots to teens, but it was hard to get them to show up for all three doses. "So they said, 'Well, we've got a captive audience and we want to give it to the newborns anyways.'"
Katz developed a measles vaccine now manufactured by Merck, which also manufactures a Hepatitis B vaccine. Katz said when he was chairman of the committee in 1991 he also worked as a paid consultant for Merck, Wyeth and most major vaccine manufacturers.
He said conflicts do not pose a real problem. "I think it has increasingly become a problem, but it is a perceived problem, not a real problem," Katz said. Another member of the committee in 1991 was Dr. Neal Halsey, director of the division of disease control at Johns Hopkins University. He continued to advise the committee throughout the rest of that decade, as did Katz.
Halsey is a former CDC employee who has done research paid for by most of the major vaccine manufacturers. When he testified before the House Government Reform Committee in 1999, he disclosed a salary at that time for work on a Lyme vaccine.
He also established the Johns Hopkins Institute for Vaccine Safety, started in part with "unrestricted educational grants in 1997 from several vaccine manufacturers and some private donations," according to Halsey. Congressional investigators said that support included $50,000 in start-up funds from Merck and a payment from Wyeth. Halsey said vaccine manufacturers do not fund the center's vaccine education activities.
Halsey said the CDC needs experts like him to get the best advice.
"In order to get the people with experience, you need people who have done the research," Halsey said in a telephone interview. "To do that, you have to have people who have done research for vaccine manufacturers." Halsey said, however, that the CDC should not recommend vaccines and evaluate safety at the same time.
"I think it is a problem and I think it would be better if an independent body evaluated safety," Halsey said.
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STATEMENT BY BERNARD RIMLAND, PH.D.
THE AUTISM EPIDEMIC IS REAL, AND EXCESSIVE VACCINATIONS ARE THE CAUSE
The vaccine manufacturers, the Center for Disease Control, the FDA, and the various medical associations have failed miserably in their duty to protect our children. Rather than acknowledge their role in creating the immense, catastrophic rise in autism, these organizations have resorted to denial and obfuscation. They stand to lose their credibility, and billions of dollars in liability suits will soon reach the courts.
As a full-time professional research scientist for 50 years, and as a researcher in the field of autism for 45 years, I have been shocked and chagrined by the medical establishment_s ongoing efforts to trivialize the solid and compelling evidence that faulty vaccination policies are the root cause of the epidemic. There are many consistent lines of evidence implicating vaccines, and no even marginally plausible alternative hypotheses.
" As the number of childhood vaccines has increased 700%, from 3 in the _70s to 22 in 2000, the prevalence of autism has also showed a parallel increase of 700%..
" Late onset autism, (starting in the 2nd year), was almost unheard of in the _50s, _60s, and _70s; today such cases outnumber early onset cases 5 to 1, the increase paralleling the increase in required vaccines.
" Thousands of parents report _ and demonstrate with home videos -- that their children were normal and responsive until suffering an adverse vaccine reaction. (The Autism Research Institute has been tracking such autism-related vaccination reactions since 1967.)
" Mercury, one of the most toxic substances known, is used as a preservative in many vaccines. Some infants have had 125 times the maximum allowable limit of mercury injected directly into their bloodstreams, in one day, in vaccines. (People vary enormously in their sensitivity to mercury, because certain genes predispose to mercury sensitivity. The highly-touted New England Journal of Medicine Danish study failed to mention the very convenient fact that none of the Danish children had prior exposure to mercury, since Denmark, unlike the U.S. had, banned mercury from childhood vaccines in 1992, the year before the birth year of the children in the study.)
" There are numerous scientific studies showing large differences in clinical laboratory measures of blood, urine and biopsies which compare autistic children with normal controls. Such findings, pointing directly to vaccines as the cause of the group differences, are conveniently overlooked by those attempting to conceal the strong connection between the autism epidemic and excessive use of unsafe vaccines.
The truth must _ and will _ emerge. It is long overdue.
Bernard Rimland, Ph.D.
Director, Autism Research Institute
Editor, Autism Research Review International
Founder, Autism Society of America
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5) TACA FAMILIES – WE NEED TO HEAR FROM YOU!
Occasionally, we ask TACA families to provide feedback that will assist in making TACA a more valuable resource. Please take a minute to respond (tacanow@cox.net). Thank you.
1. How did you hear about TACA?
2. What TACA location are you associated with?
3. How many TACA meetings have you attended?
4. Why do you attend TACA meetings?
5. What facet of TACA provides the most value?
Please send the answers to TACANOW@COX.NET
With the email subject line: TACA SURVEY!
Thank you for taking the time! We appreciate it!
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6) CONFERENCES IN SOUTHERN CALIFORNIA:
"HOPE
FOR THE FUTURE" at the Ontario Convention Center, Saturday and
Sunday, September 27 & 28th. A Two-day Conference for Parents,
Teachers, Counselors and anyone interested in knowing more about children who
learn and behave differently presented by the Inland Empire Autism Society in
collaboration with the LDA of Pomona Valley.
The conference includes:
-Pre-conference, Hands On Workshop: "Living with Sensory
Overload,"
- Nationally Known Speakers Jerry Newport, Stephen Shore, Bryn Hogan from
The Autism Treatment Center, Rick Rollens, and attorney Christopher Angelo
- Breakout sessions that include Sexuality and Puberty, Information of 504 and IDEA, Homeschooling, the DAN! protocol, transition topics, communication, inclusion, social skills, behavior issues, advocacy and more!
- Author's Book Signing and Exhibitors - AND a Special Full Day Workshop For
Teens and Young Adults (from 14-24). A session designed to explore your own
potential with some awesome teachers, counselors and adults who overcame the
odds. Food, prizes and music! Participants must have attention level skills and
interests sufficient to allow independent group inclusion. For any questions
regarding this workshop, please contact the workshop facilitator, Arline
Krieger, MA at (909) 621-1494
For a conference brochure, please call (909) 549-1777.
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Jay Nolan – Journey to Solutions 2003
Friday November 14 – 16, 2003 – Pasadena Conference Center
Location: 300 East Green Street, Pasadena 91101
Hear about the most current information and research on autism spectrum disorder. Topics includes: Floortime, Behavior, High School Academics, Super Sensory Workshop, Strategies for Successful inclusion, Visual Strategies to Enhance Language and Promote Early Literacy, Communication Techniques & Therapies, Role of Medication for ASD and much more.
Speakers include: Sean Barron, Margaret Bauman MD, Teresa Bolick Ph.D., Brenda Bursch Ph.D., Cure Autism Now, Anne Donnellan Ph.D., Barbara Doyle M.S., Gail Gillingham M.S., Esther Hess Ph.D., Paula Kluth Ph.D., Lisa Lewis Ph.D., Rajarshi ‘Tito’ & Soma Mukhopadhay, Jerry Newport, Jamie Ruppmann, Jeffrey Sell Esq., Rosemary White O.T.R., Pamela Wolfeberg Ph.D..
Invited Organizations: California Institute of Technology, National Alliance for Autism Research, MIND Institute, National institute of Mental Health, Nation Center on Birth Defects & Developmental Disabilities. Hosted by the Jay Nolan Community Services, Inc.
For more information (818) 242-9108 or email conference@jaynolan.org
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Children's
Hospital in San Diego is hosting Tony Attwood on Oct. 15 from 8:30-3:30.
Making Friends and Managing Feelings:
Asperger's Syndrome & High
Functioning Autism. The cost is $120 ($100 for
early reg.).
For more information you can check the website: www.chsd.org/autism
Location: Children’s Hospital of San Diego
Challenging
Behaviors in Autism: II
October 25, 2003
9 a.m. - 1 p.m. - Lake Avenue Church, 393 N. Lake Ave., Rm 203, Pasadena
Pasadena
Child Development Associates is hold a one-day workshop on floortime strategies
to support appropriate behavior. This is a continuation of a discussion of
challenging behaviors presented in Part 1 from June 2003.
Topics to be addressed:
Cost $50. For questions, please call Cambria at 626.793.7350. A copy of the registration form will be available through your CSC or Facility Liaison.
http://www.mailermailer.com/x?u=6452565d-56539404
MAJOR Autism Conference announced for Southern California by CASD.
Location: Santa Monica – February 20-22, 2004
Watch web site for speaker list: http://www.casdweb.org/index.htm
If you have questions or would like more information, please email the director at kazuko@grandecom.net.
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7) SOCIAL EVENTS
South Coast Plaza FREE Carousel rides!
Attention all TACA members! Diane Gallant has worked hard with South Coast Plaza management 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!
Dates:
Next date is: Saturday, 8/16/2003
Times: 8:30am-9:30am
(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. Come join us for some free fun!!
NO NEED TO RSVP! JUST COME AND PLAY!!
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8) Dr Jerry Kartzinel Seminar Tapes on sale
Conference was held: May 31, 2003
Total Number of Tapes: 3 (90 minute -double sided tapes)
Total Hours: 6 (including presentation & Question / answer period)
Total Costs: $25.00 Includes shipping ($20 if you pick up at TACA Meeting)
Summary:
The latest medical treatment and protocol by world renowned Dr Jerry Kartzinel of the GND Foundation / ICDRC. Hear the latest in treatments and guides for parents on how to help navigate the medical needs in the autism world! Web site; www.icdrc.org
Disclaimer: These tapes are not to be misconstrued as medical advice. You need to seek individual professional treatment from your doctor before trying any treatments mentioned on the tapes. Ordering these tapes means you agree to this statement.
Name:____________________________________
City:_____________________________________
State:_________ ZIP Code: _____________
Email Address: ________________________
Checks only for order. Make checks payable to: ICDRC Check no. attached:________
Please mail form TACA P.O. Box 12409 Newport Beach, CA 92658-2409
HOW FUNDS ARE BEING USED: The sales of the tapes act as a fundraiser for ICDRC/ GND Foundation. These tapes are being produced at a low costs for parents. Funds will be distributed to ICDRC / GND Foundation or hard costs on producing the tapes.
______________________________________________________________________
9) Gluten Free / Casein Free (GFCF) Cooking Class at Bloomingdales!:
Based on the requests from TACA Surveys – a beginner level GFCF Cooking class will be held on September 13th at the Bloomingdales Fashion Island Location in Newport Beach.
Important note: THIS MEETING AT BLOOMINGDALES IS IN LIEU OF A REGULAR TACA COSTA MESA MEETING AT THE VINEYARD NEWPORT CHURCH!
Date: Saturday, September 13, 2003
Time: 2:30 – 5:00pm
Local:
Bloomingdales
HOME STORE in Newport Beach at Fashion Island
The Home Store is located on the THIRD FLOOR above the ATRIUM COURT!
It is best to park near Hard Rock Café and enter off the Atrium Court glass
doors.
Speaker: Lisa Ackerman
Reservations: YOU MUST RSVP to attend the class!
Details: The presentation will be a beginning Gluten Free/Casein free (GFCF) cooking class. It is estimated over 85% of children affected with Autism, ADD, ADHD and other learning disorders greatly benefit from an organic, clean, GFCF diet. This course will do an overview on why do the GFCF diet and how to get started. We will be preparing GFCF foods to appease the appetites of children so be prepared to eat like a kid! Handouts will be available for free off the internet site: www.talkaboutcuringautism.org or available in binder form for a suggested donation of $10.00 each. Binders will include recipes for the day, all recommended recipes, how to get started, food shopping lists and much more! Donations for supplies are appreciated but not required for attendance.
Note, RESERVATIONS are required for the class.
Recipes will include the following: infamous meat puffs (these are finger sized meat loafs for kids) a GFCF, egg free, yeast free bread, a tasty muffin, traditional chocolate chip cookies, and a chicken dish, and some meal planning ideas around allergies.
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10) Personal Note:
Since the last TACA e-news I have received many nice notes on Jeff and his setback. Thanks to all for your kind words and prayers. He is doing well and bouncing back now. Still there are remnants of some behaviors (little mini-tantrums lasting a minute.) We seem to be pushing the little man more in his program and that can be the cause of his little outbursts. In addition, summers may be hard on all our kids where the structure of their days, albeit still busy, are off. Good news, Jeff is bouncing back and school starts in 3 weeks!
This is the time of year my family and I take some time off and vacation around home but avoid work and take a reprieve. If you email or try to contact me over the next couple of weeks, I am taking a break and please be patient.
I hope you all enjoy what is left of summer!
Hugs,
thanks and be safe -
Lisa A Jeff's mom
Web Page for the TACA GROUP: www.talkaboutcuringautism.org - check it out / let me know your thoughts at contact us!
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA does not engage in lobbying or other political activities.
P.S. TACA e-news is now at 739 families