Autism First Steps 11-27-01 (Part 3)

AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday, November 27, 2001

INDEX:
* ASA PRESIDENT APPOINTED TO AUTISM COMMITTEE
* Families getting guidance Initiative helps keep kids, parents together
* School Nurses Speak Out on Hepatitis B Vaccine
* Researchers Identify Possible MS Gene
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U.S. SECRETARY TOMMY THOMPSON
APPOINTS ASA PRESIDENT TO AUTISM COMMITTEE

Bethesda, MD - November 26, 2001 - The Autism
Society of America is pleased to announce that
ASA President Lee Grossman has been appointed to
the newly-created Interagency Autism Coordinating
Committee. The committee, which was established
by the Children's Health Act of 2000, is tasked with
coordinating autism research and other efforts of the
Department of Health and Human Services. The
National Institute of Mental Health, which is part of
the Department of Health and Human Services, is
the lead agency for this committee.

Grossman's appointment, which Secretary of Health
and Human Services (DHHS) Tommy Thompson
made official this week, marks the first time that an
individual outside of the government has been
appointed to an interagency government committee
established specifically for autism. The ASA was a
leader in securing passage of the Children's Health
Act of 2000, which launched this committee.

The primary mission of the coordinating committee
is to facilitate the effective and efficient exchange
of information on autism activities among the
member agencies, and to coordinate autism-related
activities. The committee will serve as a forum and
assist in increasing public understanding of the
member agencies' activities, programs, policies, and
research and in bringing important matters of
interest forward for discussion.

The act specifically mandates that parents or legal
guardians of individuals with autism or other
pervasive development disorders be appointed to
the committee, and that public members will bring
to the DHHS the concerns and interests of members
of the autism community.

Robert L. Beck, executive director of the ASA,
noted that as a parent of a child who has autism and
the president of the ASA, Grossman is perfect to
fulfill this important task on behalf of the autism
community.

"Of the many attributes Lee brings to his leadership
responsibilities, one of the most striking is his
ability to facilitate consensus. Lee has been able to
balance his business leadership background with
years of experience in all facets of the autism
community to be a voice of reason. Lee's first
priority has always been what's best for the autism
community," Beck said.

Grossman, who has been a tireless advocate at both
the state and national levels for more than 10 years,
said he is eager to take on this new role on the
Interagency Autism Coordinating Committee.

"I am honored to have been chosen to represent the
autism community on this important committee. It
is a testament to the important work that the ASA
has been doing for more than 35 years," Grossman
said. "I look forward to working with this dedicated
group of professionals in forging new answers to
the autism puzzle and improving the lives of those
touched by autism."

Grossman is currently the president of the Autism
Society of America and has been on the ASA Board
of Directors for the past six years. He is a business
owner and resides in Honolulu, Hawaii, and is the
past president of the Autism Society of Hawaii. He
participates on many committees and boards in
Hawaii that deal with developmental disabilities and
mental health issues including the parent training
institute in Hawaii. He has also conducted support
groups in the disability community with a particular
emphasis on autism. He has presented at the last six
ASA National Conferences on IEP and special
education law and has been chair of the legal issues
and advocacy ASA pre-conference workshops. As
the plaintiff representative for the Autism Society of
Hawaii, Grossman was instrumental in bringing a
class action lawsuit against the state of Hawaii for
their non-compliance of Section 504 and IDEA.
This action was settled in favor of the plaintiffs on
October, 1994. Grossman and his wife Nina have
three sons.

The first meeting of the Interagency Autism
Coordinating Committee was held on Monday,
November 19, 2001, at the National Institutes of
Health in Bethesda, Md. A follow-up article on the
committee will appear in the next issue of ASA's
newsletter, the Advocate.
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Families getting guidance Initiative helps keep kids, parents together
Before George even turned 4 he'd been kicked out of several day cares

"Schools couldn't handle him, babysitters couldn't handle him, his grandmother couldn't handle him," said the boy's father, Richard. "We worked full time but had to take time off work. We just needed help."
Even after George, now 6, was diagnosed with attention deficit disorder and possible autism, his Lower Naugatuck Valley family had trouble navigating the overwhelming maze of mental health services.
Now, a care coordinator from the Parent Child Resource Center in Shelton guides them. She created an individualized plan for George, including a membership to the YMCA for much-needed recreation as well as gift certificates so his family could buy new clothing after medication caused his weight to balloon.
"A lot of times when you have a child like this and you're trying to get more help, you're hitting walls," said his mother, Anne, who asked that the family's real names not be used. "You need someone who has time to make the phone calls." Under a new network of Department of Children and Families services, more Connecticut kids with complex emotional problems would receive the intensive case management that has improved life for George and his family.
As early as December, DCF plans to roll out its new KidCare initiative in the New Haven area. The foundations for KidCare are emergency mobile units that respond to family crises and "care coordinators" who provide individualized treatment plans for children.The legislature approved about $23 million last session to kick off the initiative over the next two years. Officials hope KidCare will plug gaps in the state's child mental health services, which have led to hundreds of children being placed in out-of-state residential treatment. "We want to keep kids with their families and in their communities," said DCF Commissioner Kristine Ragaglia, adding that children uprooted for treatment often wonder, "Why do you have to take us away from everything we know and everything we cherish?"
Families in the middle of a mental health crisis will be able to call DCF and have a team of psychiatric professionals stabilize the situation, either on the phone or at their houses. The mobile teams, also available for schools, are meant to decrease the use of 911 and emergency rooms.
Also under KidCare, more care coordinators like the ones who helped George's family will be hired. While the South Central Connecticut region currently has 5½ full-time care coordinators, 13 will be in place after KidCare is initiated.
Care coordinators create plans for each family, using clinical and non-traditional services to manage a child's mental health problems, from respite for parents to therapy and medication for the child.
The care coordinator program is now handled by "community collaboratives," groups concerned about child mental health and composed of leaders from churches, schools and agencies.
"This is really part of an effort to keep kids where they belong," said Jim Carr, regional DCF director. "KidCare in my mind represents individualized planning, which is a real enhancement to what we currently have."
George's parents acknowledge that raising George, his brother and sister is still grueling. They revolve their lives around routine and consistency as much as possible, but they must learn new coping skills every few months to keep up with George's changing behavior.
The situation, though, is much better than three years ago. Just last week, George's special education kindergarten teacher gave him a five-star review. And his parents credit the support from their care coordinator, Ann Lopresti.
"They are the only people who follow through, and everything they say they're going to do, they do," Richard said. "I can't say that about any other program."
http://www.zwire.com/site/news.cfm?newsid=2684372&BRD=1281&PAG=461&dept_id=7576&rfi=6
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School Nurses Speak Out on Hepatitis B Vaccine

Statement to the Subcommittee on Criminal Justice, Drug Policy, and Human Resources of the Committee on Government Reform U.S. House of Representatives

Subject: Hepatitis B Vaccine: School Nurse PerspectiveThis is a school nursing perspective for the congressional hearings on May 18, 1999 regarding the safety of the hepatitis B vaccine that is being mandated for newborns and now older children in America.
Our Central District School Nurse Association asks you to please consider the following information and submit it into the congressional testimony. We continually see more and more damaged children entering our schools, and are very concerned that a major portion of that damage may be due to the hepatitis B vaccine's assault on the newborn neurological and immune system.My name is Patti White, R.N. I am a registered professional nurse and the district health services coordinator for a multi-school district. I am writing on behalf of the school nurses in our district. We have very grave concerns about the hepatitis B vaccine.For the past three or four years our school districts have noted a significant increase in the number of children entering school with developmental disorders, learning disabilities, attention deficit disorders and/or serious chronic illness such as diabetes, asthma and seizure disorders. Each of the past four years has been worse than the year before. There is only one common thread we have been able to identify in these children: they are the children who received the first trial hepatitis B injections as newborns in the early 1990s.As the hepatitis B compliance rate in newborns has gone up in our community, so has the percentage of damaged children. This is very alarming. Because of having so many damaged children we have tried to find the long term clinical trials that ruled this vaccine "safe and effective". We discovered through an exhaustive Medline search that the FDA based its decision to approve hepatitis B vaccine for administration in the first hours of a newborn baby's life upon clinical trials and upon post-marketing surveillance studies in which patients and their doctors were asked to report any adverse effects they noticed within 4-5 days after each injection [4 days for SmithKline and 5 days for Merck].The problems being reported in increasing numbers as occurring after hepatitis B vaccination appear to be autoimmune and neurological in origin. Such problems take weeks to months to produce noticeable symptoms, and cannot be spotted in a 4-5 day observation period. These are the only clinical studies that have been done by Merck or SmithKline. There is not one long-term study that we could find.The CDC and FDA have no idea what the long term effects will be on the newly developing neurological and immune systems of the infants who are injected with this vaccine. They seem to only be concerned with denying the connection between these damaged children and the hepatitis B shot they received within a few hours of birth. The CDC even admits the lack of study and states they do not even know how long the vaccine will be effective. We found this amazing since the vaccine was developed for a population at risk for hepatitis B: IV drug users, high risk medical professionals and those who are involved in high risk sexual practices.In 1950 (before mass immunizations began), the USA had the third lowest infant mortality rate in the world. By 1986, the USA dropped to 17th place. In 1995 the USA dropped to 23rd and now the USA has dropped to the appalling position of 24th in the health of its children (but the USA is now first in vaccine compliance through government mandates). Does this make you nervous too?The elementary grades are overwhelmed with children who have symptoms of neurological and/or immune system damage: epilepsy, seizure disorders, various kinds of palsies, autism, mental retardation, learning disabilities, juvenile-onset diabetes, asthma, vision /hearing loss, and a multitude of new conduct/behavior disorders. We have come to believe the hepatitis B vaccine is an assault on a newborns developing neurological and immune system. Vaccines are supposed to be making us healthier, however, in twenty-five years of nursing I have never seen so many damaged, sick kids. Something very, very wrong is happening to our children. The census of ill children seen in our health rooms each day has increased by 300% in only four years. It had remained relatively constant in all the years before.In our last regional school nurse meeting we discussed whether the combination of so many viruses at one time (hepatitis B vaccine at the same time of the DPT, OPV or MMR) is causing the infants immune system to be overwhelmed and unable to mount a sufficient defense response. We are advocating clinical studies to determine: Is the combination of all these viruses at one time an assault on an infant's immune and neurological system that increases the chances for adverse reaction AND what are the long-term neurological and immune system responses to these vaccines. We are all continuing to research this issue and will be happy to share the many resources we have found with you. I hope you will do the same as you open up this issue.We (nurses, principals and teachers) have talked many times about the possible cause(s) of the continuing increase in pervasive developmental disorders (PDD), such as autism. From the literature we have found, we should expect a rate for PDD of about 2-5 in 10,000. In our community the rate in Kindergarten, 1st and 2nd grade is more like 1 in 150. The teaching staff is overwhelmed.As school nurses, we have had many parents calling and asking how they can exempt their children from the hepatitis B vaccination (HPB). Many of them have spent long hours in study and research perplexed over this issue. For the past six months we have been studying documents, books and research articles published by internationally respected doctors and scientists that cause us grave concern. You must understand that we began this study to reassure our parents and show them the truth about how safe vaccines are. Unfortunately, our sincere, honest, dedicated study has caused a complete reversal of our once strongly held beliefs. Instead of being able to reassure the parents, we have found ourselves being drawn deeper and deeper into this unbelievable controversy over vaccines that is raging among physicians, scientists, researchers, parents, and the government. We pray you will have the courage to shine the light on this controversy through these hepatitis B hearings.My daughter's own experience with the hepatitis B vaccine made me much more open-minded to the information we have been receiving from parents, teachers and other nurses in our community. I personally have had to research this on my own to determine if I have been enforcing a policy that is actually harming more children than it will ever help. I have spent countless hours reading books, vaccine-hearing testimony, research papers, medical journal articles and Internet web-sites from around the world. I did not come to my decision easily or lightly, I assure you. Twenty-five years of total belief in something does not shake that easily.I have repeated the well-rehearsed refrain "Be Wise; Immunize" thousands of times during those years and reassured countless parents that they were doing the right thing by vaccinating their precious children . . . even the ones who came to me with serious doubts and reservations. I will now have to live with that.We are all now faced with a moral dilemma: will we protect the "sacred cow of conventional vaccine philosophy" or will we stand up and speak out for the "health and well being of innocent children"? We choose children. We wonder, which will our government choose?Because the hepatitis B vaccine was developed for those at risk of disease, including IV drug users and sexually promiscuous individuals, efforts to require administration of the vaccine to most, if not all of the U.S. population is very controversial. The increasing number of adverse reaction reports connected with this vaccine exacerbates the controversy. The controversy stems to a great extent from our lack of understanding of the mechanisms of the immune response to the hepatitis B surface antigen and lack of long term follow-up of individuals who have received the vaccine. In a January 27, 1999 press release, the National Vaccine Information Center (NVIC) released figures which show that the number of hepatitis B vaccine-associated serious adverse event and death reports in American children under the age of 14 outnumber the reported cases of hepatitis B disease.During our research we discovered a copy of the grant proposal submitted recently to the National Institute of Health by Dr. B. S. Dunbar, who has worked in autoimmunity and vaccine development for over twenty years and was honored two years ago by the National Institute of Health. Dr. Dunbar is working with a team of veteran vaccine researchers from all over the world. Their grant is requested for the purpose of studying the hypothesis that: hepatitis B recombinant vaccine does cause adverse autoimmune reactions in genetically susceptible individuals. This study will also provide new insights into the predictability of determining adverse side effects of the hepatitis B vaccine in individuals at risk as related to their histocompatability subtypes. Their study of auto-immune diseases/symptoms caused by the hepatitis B vaccine include: lupus erythematosus, rheumatoid arthritis, vascular disorders, Guillain Barre syndrome, demyelinating disorders such as optic neuritis (blindness), Bell’s palsy, demyelinating neuropathy (multiple developmental disorders), multiple sclerosis, diabetes mellitus and chronic fatigue syndrome to mention the most common.This group of internationally respected vaccine researchers headed up by Dr. Dunbar also point out that, "The studies (for the approval of HPB) were not designed to assess serious, rare adverse events; the total number of recipients were too small; and the follow-up was too short to detect rare or delayed, serious, adverse reactions." Finally they point out that "overall the number of examples of adverse neurologic outcomes following receipt of hepatitis B vaccine are of concern, particularly those resulting in demyelinating neurologic disease."They continue, "In view of these observations. . . it is medically crucial to evaluate the nature of the autoimmune reactions (i.e. risks) associated with the hepatitis B vaccine and to determine if individuals who will have these adverse reactions can be identified in advance of receiving the vaccine". There are critical questions that must be addressed to establish the risk/benefit of the current hepatitis B vaccines in the United States. These questions are particularly important in view of recent mandates to vaccinate all children including newborn infants."You may read this grant proposal at: http://webpages.netlink.co.nz/~ias/dunbar.htm
Many groups have called for a moratorium on hepatitis B vaccination until some of these questions can be answered adequately. The NVIC reported "Newborn babies are dying shortly after their shots and their deaths are being written off as sudden infant death syndrome. Parents should have the right to give their informed consent to vaccination and Congress should give emergency, priority funding to independent scientists, who can take an unbiased look at this vaccine, instead of leaving the search for truth in the hands of government officials who have already decided to force every child to get the vaccine". We agree completely. The NVIC can be contacted at http://www.909shot.com for further information.In Dr. Coulter’s book, "Vaccination, Social Violence, and Criminality" the thesis is developed that the "sociopathic personality" which has emerged on a mass scale in recent decades, and which is responsible for a disproportionate amount of crime and violence, is causally linked to the childhood vaccination program. Vaccination frequently causes encephalitis and neuropathy that in turn leads to these post-encephalitic states and conditions. In his book, Dr. Coulter presents a time line of increase in developmental disability related to vaccine introduction that is indeed frightening. Dr. Coulter believes about 20% of our children are suffering from this neurological vaccine damage. Our own school district's confidential health statistics show at least 20% of our children (K-3) have significant neurological damage and/or chronic illness. The last three years have shown an acceleration in the numbers of children who are entering our schools with these "developmental disorders". (Could these be the same infants who received the first trial doses of hepatitis B as only a few hour-old newborns?) As school nurses, working with these damaged children on a daily basis, we pray this is not true. If it is, the ramification to this generation of children is unthinkable!Should we not pause, call for a moratorium on these poorly tested, rapidly approved vaccines, and allow independent American physicians and researchers to study them before blindly injecting an experimental vaccine into an entire generation? (We have found the only ones declaring the vaccine's safety are the ones who are making millions of dollars from its sales, whose employment depends on it or the ones being supported by the drug companies vast number of grants and fundings. The independent researchers seem to be coming up with an entirely different report.)Vaccine producers have nothing to lose since our U.S. Congress has made them immune from responsibility or liability for injuries caused from their vaccines. The push is on for them to create more and more vaccines. There are huge amounts of money being made by these people who no longer worry about the consequences of their inadequate clinical trials. The United States government has had to pay out nearly a billion dollars in damages to families who can prove their children have been damaged or killed by vaccines, and there are thousands more cases pending. We believe, as medical professionals, that we are doing a great disservice to our country by forcing government mandated vaccines on all children. Please research this and we pray you have the courage to speak out and tell the nation what you find. Sincerely,Patti White, RN

Missouri Central District School Nurse Association rpwhitey@iland.net Related Articles:
To Immunize or Not to Immunize How To Be Wise When You Do Immunize What To Consider Before Taking the Chicken Pox Vaccine Another Vaccine? For Ear Infections? Safety of Rotavirus Vaccine Questioned Thimerosal Vaccine Facts

http://www.vaccinationnews.com/DailyNews/June2001/SchoolNursesSpeakOut.htm
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Researchers Identify Possible MS Gene

By Merritt McKinneyNEW YORK (Reuters Health) - Scientists have discovered a gene that may be involved in multiple sclerosis (MS) and other diseases that destroy the protective covering of the brain and spinal cord.The findings suggest that blocking the activity of the gene may slow the progress of MS, researchers say.Multiple sclerosis and many other types of neurological diseases slowly destroy myelin, the thin, protective coating that insulates nerve fibers in the brain and spine. The destruction of myelin can lead to numbness, muscle weakness and stiffness, impaired vision and coordination problems.Dr. Lawrence Steinman of Stanford University in California and colleagues searched a gene ``library'' containing thousands of samples of brain tissue from people who had died of MS to look for genes possibly involved in the disease.Several different forms of a gene that makes a protein called osteopontin showed up over and over again, Steinman told Reuters Health.``We found a dozen copies of osteopontin,'' he said.The researchers next studied the expression, or switching on, of the osteopontin gene in experimental models of MS in mice. They found that the expression of the gene varied in different stages of the disease. For instance, the gene was expressed in neurons when symptoms were present, but not during remission of the disease.The investigators also discovered that the MS-like disease was much less severe in mice that lacked osteopontin. These mice also experienced more frequent remissions of the disease than mice that had the gene. The results of the research are published in the November 23rd issue of the journal Science.MS is thought to be an autoimmune disease, meaning that it occurs because the body's immune system has turned against its own tissue. Osteopontin appears to interact with a type of immune-system cell called a T helper cell-1 to affect MS, the report indicates.The authors speculate that targeting the expression of the gene may help block the development of progressive MS.According to Steinman, other genes in the library besides the osteopontin gene may play a role in MS.``We have identified the titles but haven't yet read the contents,'' he said.SOURCE: Science 2001;294:1731-1735.
http://dailynews.yahoo.com/h/nm/20011122/hl/ms_gene_1.html
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