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Autism Recovery Network
Autism Incidence Statistics & Epidemiology
US Department of Education Figures On Autism
Number and Change in Number of Children Ages 6-21 Served Under IDEA, Part B www.ideadata.org/tables/ar_aa2.htm
The Autism Explosion
Bernard Rimland, Ph.D.
Autism Research Institute
www.autism.com/ari/editorials/explosion.html
The Autism Autoimmunity Project www.gti.net/truegrit/
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December 14, 2001
Autism "No Longer A Rare Condition"
[By Emma Young.]
http://www.newscientist.com/news/news.jsp?id=ns99991687
A massive and co-ordinated research effort to identify the causes of autism is urgently needed, say the authors of a major UK Medical Research Council review of autism research.
The review concludes that autism and related disorders are far more common than previously thought - and that there is no firm evidence to date linking any environmental trigger with the disease.
Autism and related disorders affect six in every 1000 children aged under eight, the team found. The previous figure accepted by the MRC was between one and two per 1000. The increase is bound to altered ideas about what constitutes an "autism spectrum disorder", as well as increased awareness of the condition, the group says.
Their review of previous research revealed no evidence of a link between the controversial MMR vaccine and autism. The group also found no firm evidence linking immunological or bowel problems with the disorder - links that have been suggested by some researchers.
"There have been some recent very high quality epidemiological studies in the UK, but individually, these studies are quite small. We need future research that is interdisciplinary and has the strength of being population-based, so we're not studying biased samples of children," says Carol Dezateux, a consultant paediatrician at the Great Ormond Street Hospital in London, and a member of the review group.
Nature vs nurture
Judith Barnard of the UK's National Autistic Society, who took part in the review, says: "We're very pleased with this report, which has been long overdue. It's an area that has been woefully under-researched in the UK in the past. Most importantly for me, the report formally recognises that autism can no longer be considered to be a rare condition."
The group says it is increasingly clear that there is a genetic component to autism. But long-term prospective studies of large numbers of children, including genetic, as well as detailed health and lifestyle data, will be needed to help tease apart the genetic and environmental components of the disorder, says Dezateux.
Much more basic biological work, to investigate differences between autistic and healthy brains, for example, is also necessary, she says.
Dedicated funding
How that research will be co-ordinated is another matter. The MRC can boost "robust" inter-disciplinary autism research proposals by targeting funds at these projects, Dezateux says.
But, says Barnard: "Two years ago, the MRC issued a report on autism and bowel disorders and called for specific research. Nothing on that list has yet been done, because they are waiting for 'robust' proposals." "We are asking the Department of Health for a dedicated funding stream for autism research," she says, "and raising the issue of a need for a pro-active body to implement the findings of these review."
The review is published on the MRC's website: http://www.mrc.ac.uk/PDFs/autism_report.pdf
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December 13, 2001
Autism 2001: The Silent Epidemic
F. Edward Yazbak, MD, FAAP.
Note: The information is not a substitute for diagnosis and treatment by a qualified, licensed professional.
Although 2001 was filled with news of the MMR vaccine controversy, discussion of the enormity of the autism explosion and its impact has been minimal. In the UK, the Government spent more money and enormously more time defending the MMR vaccine and destroying its critics than actually researching the causes and the increasing incidence of autism. The cruel reality is that the last published incidence of autism in the UK of 1 in 324 (Journal of the American Academy of Child and Adolescent Psychiatry, volume 39, p 694), was just amended this week to 1 in 166, according to a Medical Research Council (MRC) report commissioned by the Department of Health. A National Autistic Society survey had found that 1 in 110 children under 11 has autism.
The vaccine authorities still assert that the reported increase is unrelated to the use of the MMR vaccine but offer no other reasonable cause. The toll in human suffering is immense, and the actual financial cost per child for a lifetime of care and support services is a staggering 2 million plus British pounds.
Similar increases in the incidence of autism have been reported on the European Continent. A Swedish study in 1993 by Ehlers and Gillberg found a rate of 71 per 10,000 (1 in 141) in children with IQs of 70 or above. A Finnish study looking at the incidence of autism in the northern provinces, revealed a fourfold increase between 1979 and 1994 with a present incidence rate of 1 in 483 among 5 to 7-year-olds (European Child and Adolescent Psychiatry, volume 9, p 162). Also, in this study, a clear increase in the number of children with IQ of 70+ was reported. (This finding has often been reported with regressive or late-onset autism.) Interestingly, this particular Finnish study went almost unnoticed, while other Finnish studies (of dubious epidemiological relevance) were highly publicized because they supported the MMR vaccine's safety.
In the United States, the atrocities of September 11, the Anthrax letters and the present war in Afghanistan have certainly touched every one. But life goes on. For the parents of children with autism, each day's battle is overwhelming and their lives have changed forever. There is no final victory they can look forward to and no end to their war in sight. Each morning brings new problems, new challenges and more concerns about funding cuts and decreased services. Every night, the same awful dream recurs “What will happen to my child when I am gone?
According to the Department of Education annual reports to the US Congress, autism cases in children aged 6-21 in US schools increase yearly by approximately 25.
Since September 12, it is more than likely that between 600 and 700 new cases of autism were diagnosed and accepted into the system in California alone. This projection is based on the last published 3-month rate of between 7 and 8 new cases a day. If the average incidence of new cases of autism in the remaining 49 states averages only 1/8th of the California rate-- a very conservative estimate, indeed-- we should expect that approximately 4000 new cases of autism have been diagnosed nationwide in the last 3 months. In the United States, the cost per child over a lifetime is soon to surpass 2 million dollars.
One can only imagine the outcry if there was an outbreak of 4000 cases of any other pediatric illness in the same 3-month period. The CDC specialists would be clamoring for a cure and seriously looking for clues to the epidemic. Why aren't they?
We witnessed the reaction that followed 15 cases of anthrax on the East Coast. Before anyone without personal experience with autism rushes to criticize this statement, I respectfully submit that 10 out of the 15 cases of anthrax went on to complete recovery, a result we will never have with autism. As for the five deaths from anthrax, they are certainly sad and most unfortunate but children with severe autism have brain damage, and die every day even if they are still breathing and moving. Every day, their parents and grand parents die a little too.
Research into the causes of autism is being carried out nationwide. Many studies dealing with biochemical and genetic causes are published and only receive transient interest. It is likely that many studies concerning genetics now in progress will go similarly unnoticed, as it is impossible to have an epidemic of genetic diseases.
The impressive mercury study undertaken by a group of dedicated parents in New Jersey is different. It deserves our attention and gratitude, and supports the original Redwood theory of mercury damage. It now appears that the CDC also carried out a study, which suggested some relationship between mercury in vaccines and neuro-developmental disorders in infants.
A special committee of the Institute of Medicine (IOM) held hearings on the subject of mercury and autism, and recommended removing thiomerosal from all pediatric vaccine formulations. The American Academy of Pediatrics (AAP) and the CDC had also recommended an all mercury-free vaccine schedule. All three organizations believe that mercury-containing vaccines have not actually caused damage to children.
Concern over mercury has attracted the attention of the manufacturers of adult vaccines. On November 21, the FDA announced that a single-dose influenza vaccine for adult use, with only a trace of thiomerosal, is now available.
Our own research seems to indicate that, certain children have reacted unfavorably and were "set-up" by mercury-containing vaccines in year one and then have regressed into autism following another antigenic insult in their second year of life.
The auto-immune theory of autism and the possible relationship between autism and MMR vaccination have captivated many minds since they were formulated in 1998. Although no one has proved conclusively that MMR vaccination has contributed to the increase in autism in the western world, no one has convincingly proved that it has not.
While the vaccine lobby and authorities have adamantly and viciously condemned Andrew Wakefield and his findings, hundreds of parents are totally convinced he is right. These parents have no doubt that their previously normal children became symptomatic after their first MMR vaccination and then regressed into autism, and many have videos, pictures and doctors' notes to prove it. A further regression after the second MMR, at age 5, seems to have convinced some of those parents even more.
The identification of measles by intricate PCR testing in the British pathological specimens and the later revelation that these measles strains were of vaccine origin, by independent Japanese researchers, do offer more support to the hypothesis. The likelihood that any investigator would try duplicating these findings after witnessing Dr. Wakefield's public lynching is remote.
In London, many children with autism have been investigated carefully and found to have abnormal pathology in the colon, the terminal ileum and the esophagus. A group of children in the US have also been found to have identical pathological findings.
In March 2001, an IOM committee looking at autism and MMR, reported that, "evidence favors rejection of a causal relationship at the population level between MMR vaccine and autistic spectrum disorders. A little later in the report, the committee conceded that it could not exclude the possibility that MMR vaccine could contribute to ASD in a small number of children". and went on to recommend further research on the subject.
The media propaganda asserted that the committee took the MMR "off the hook" but failed to highlight the similarity between the committee's conclusions and Wakefield's own: that the MMR vaccine could contribute to autism in a small group of genetically predisposed children, and that good research is urgently needed.
The IOM report on MMR and autism was published on April 24, 2001 (www.iom.edu, recent reports) The Institute of Medicine (IOM) Committees' conclusions, which are strictly based on epidemiological data, require a large number of cases to justify one of the following classifications.
No evidence bearing on a causal relation.
The evidence is inadequate to accept or reject a causal relation.
The evidence favors rejection of a causal relation.
The evidence favors acceptance of a causal relation.
The evidence establishes a causal relation.
It is well known that it takes years and mountains of epidemiological evidence, for the IOM committees to even consider a complication, and/or move it from a certain category to a higher one.
[The perfect example is in the report published on 4/23/2001 ONE day before the MMR report in question. It concerns Agent Orange. In 1991, the Veterans Administration commissioned a study on the defoliant and appropriated a million dollars towards that research. There have been many reports from the IOM committees on the subject and many revisions. It is only in April 2001-- a full TEN years into the study-- that Diabetes Mellitus and Children's Myelogenous Leukemia were moved from Category 3, where they had previously been listed, to Category 4. Clearly these two complications had been caused by Agent Orange exposure since the Vietnam War; hundreds of veterans and many VA physicians never doubted that Agent Orange caused them. The fact that it took the IOM committee so long to concur did not alter that reality.
At its first meeting on the subject, the IOM committee actually placed the MMR-Autism problem in category 3+ by adding that a few cases of autism did follow MMR vaccination. Many issues never make it past class 1 or 2 this early on.
It is likely that the matter will be reviewed again in the not so distant future, because of the continued attention generated by the debate, and the justified criticisms which surrounded the release of the first report.
It is tragic that while all this discussion about administering three live viruses at the same time is going on, the authorities in both the US and the UK have decided to add the chicken pox vaccine to the present MMR formulation. Not too long ago, health care providers had to wait a month between the administration of MMR and the chicken pox vaccine. Now they are assured that giving them together in the same syringe does not affect their safety and efficacy.
Other vaccines to treat less serious illnesses are being developed at a frantic pace and will be certainly added to the present "routine" schedule. Mega-combinations are promised and well known infectious disease specialists and immunologists have no difficulty stating that a child's immune system can comfortably deal with all these simultaneous antigenic assaults, even if he is very young, febrile, and on antibiotics.
Empathic and qualified pediatricians and pediatric nurse practitioners are urgently needed to control the present autism epidemic. A high index of suspicion, an early work up, and a firm diagnosis are imperative to assure timely initiation of therapy and limitation of brain damage.
The children must never be referred to as "autistic" because they do not have a psychiatric illness. They suffer from autism, a multi-system medical illness, with neurological, gastro-intestinal, endocrine, immune, developmental, communicative, and psychiatric issues. Each of them needs a pediatric expert who can care for the whole patient and who has liberal access to consultants.
Sensible and affordable therapy should be available to each and every affected child. Parents need not uproot and move to find good medical care and superior schools.
Serious independent research is urgently needed. It can not be expected from people with agendas of their own, or questionable financial ties. It also can not be performed on computers looking at epidemiological data. It must include parents' interviews and a careful examination of the affected child.
It is only then that there will be any hope to control this silent and most tragic pediatric epidemic of our time. Regressive autism should have never happened!
The above is my personal opinion and may not reflect that of organizations to which I belong.
F. Edward Yazbak, MD, FAAP
December 13, 2001
TLAutStudy@aol.com
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Prevalance of Autism in Metropolitan Atlanta in 1996
M. Yeargin-Allsopp et al. National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, GA
***N = 290,000***
The prevalance rate of autism and the possible increase in numbers of people with autism is highly debated among professionals and parents. Epidemiologic studies outside of the United States before 1985 report rates of 4-5 per 10,000 children for the autism spectrum disorders and approximately 2 per 10,000 for autistic disorder. More recent studies indicate a mean autistic disorder prevalance of approximately 1 per 1,000 children and a prevalance of approximately 2 per 1,000 children with autism spectrum disorders. Within the United States, the few studies that exist indicate low prevalance rates, i.e., approximately 4 per 10,000 children. However, one recent US study reported rates of 4.0 children per 1,000 with autism and 6.7 per 1,000 with autism spectrum disorders [Brick Township, NJ]. Recent data from the California Department of Developmental Services and the United States Department of Education also indicate large increases in the number of children with the autism spectrum disorders identified for services. Changing diagnostic criteria and examination of different populations using different methods make comparing rates and changes across sites and over time difficult.
A study by the Centers for Disease Control and Prevention determined the prevalance of autism using a population-based methodology in 5 counties of metropolitan Atlanta for children ages 3-10 years in 1996 (N = 290,000). Children with autism were identified through a systematic review of evaluation records at multiple sources, e.g., schools, clinics, evaluation centers. A panel of clinicians and researchers developed a systematic coding scheme that was applied to each individual record according to the Diagnostic and Statistical Manual of Mental Disorders IV (DMS-IV) criteria for autistic disorder. Results indicate thatthe rate for autism in the metro Atlanta area was 3.4 per 1,000 in 1996 for children aged 3-10 years. Additional demographic factors of the Atlanta population of children with autism will also be presented. These data suggest that the rate of autism is considerably higher that previously thought. Reasons for the higher rate will be discussed.
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From the desk of Rick Rollens:
January 16, 2002
With no changes in the diagnostic criteria for many years, and in a system that has been ascertaining autism since 1970, the California Department of Developmental Services (DDS) recently released the following data on the number of new cases of fully diagnosed DSM IV (Level One) AUTISM (NOT including other autism spectrum disorder such as PDD, NOS, or Asperger's, or other rare "autism like" genetic diseases):
1. An all time one year (1970-2001) record number of cases (2,725) were added to California's system in 2001. This number represents a 20% increase in one year over the previous record year of 2000. The just completed 4th Quarter of 2001 (Oct. 4, 2001 to Jan. 3, 2002) also set an all time record for numbers of new cases for any 4th Quarter in the history of the system. During 2001, each of the four quarters posted all time record setting increases. THERE WERE MORE CASES OF LEVEL ONE AUTISM ADDED IN 2001 THEN IN ALL OF 1994, 1995, AND 1996 COMBINED.
2. In 2001, for the first time ever in California's history, level one autism became the number one disability entering California's system...accounting for an astonishing 35% of all new intakes in 2001. A percentage that has exploded from historic levels of 3%. AUTISM HAS SURPASSED MENTAL RETARDATION, CEREBRAL PALSY, EPILEPSY, AND ALL OTHER CONDITIONS SIMILAR TO MENTAL RETARDATION AS THE NUMBER ONE DISABILITY ENTERING CALIFORNIA'S DEVELOPMENTAL SERVICES SYSTEM.
3. California now has 16, 802 persons with level one autism in it's system. IT TOOK 25 YEARS (1970-1995) TO ADD 6,527 CASES. UNBELIEVABLY, IT HAS TAKEN ONLY 3 YEARS (1999-2001) TO ADD AN ADDITIONAL 6,596 NEW CASES. SIMPLY PUT, WHAT USE TO TAKE 25 YEARS NOW TAKES THREE.
4. According to DDS, of the 16,802 persons with level one autism in it's system: 82% are male, 56% have NO mental retardation, and 80% were born after1980... the beginning of the autism epidemic. AMAZINGLY, OF THE TOTAL NUMBER OF PERSONS IN THE SYSTEM (16,802).... 11,104 OR TWO OUT OF EVERY THREE PERSONS (66%) ARE CHILDREN BETWEEN THE AGE 0 TO 13 YEARS OLD.
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PRESS RELEASE October 17, 2001
Press release re internal CDC report on thimerosal and autism
An announcement was made today by the law firm of Waters & Kraus, the firm that filed the first known lawsuit alleging that a mercury preservative in children's vaccines caused neurological damage to an infant ultimately diagnosed with autism. Waters & Kraus is leading a consortium of ten firms in as many states that are actively prosecuting cases of this nature (firms listed below). Andy Waters, the lead attorney in the cases, announced that his firm is now in possession of a previously unreleased confidential report authored by Centers for Disease Control scientists which studied autism as a potential neurological injury caused by mercury in children's vaccines.
A different version of the report was made public and has been cited by the recent Institute of Medicine study as inconclusive on the issue of whether the mercury-based vaccine preservative known as thimerosal has contributed to cause a nationwide epidemic of regressive autism and other neurological disorders in small children. The confidential version of the study, however, clearly demonstrated that an exposure to more than 62.5 micrograms of mercury within the first three months of life significantly increased a child's risk of developing autism. Specifically, the study found a 2.48 times increased risk of autism - that is to say, children with the exposure were more than twice as likely to develop autism as children not exposed.
In the United States, courts of law have generally held that a relative increased risk of 2.0 or higher is sufficient to substantiate that a given exposure causes disease. As but one example, in the case of Cook v. United States, 545 F.Supp. 306, at 308 (Northern District - California 1982) the Court stated that, "in a vaccine case, a relative risk greater than 2.0 establishes that there is a greater than 50% chance that the injury was caused by the vaccine."
Waters indicated that, in many of the cases his firm has evaluated, including the case filed in a Texas state court on behalf of the Counter family, the affected child received more than 62.5 micrograms of mercury through pediatric vaccines in the first three months of life.
The confidential report, which was obtained by the SAFEMINDS support and advocacy group, states: "As for the exposure evaluated at 3 months of age, we found increasing risks of 'neurological developmental disorders' with increasing cumulative exposure to thimerosal ... within the group of 'developmental disorders'... for the sub-group called 'specific delays,' and within this sub-group for the specific disorder 'developmental speech disorder,' and for 'autism,' 'stuttering' and 'attention deficit disorder.'"
The report also contained the graph depicted below which illustrated the report's findings of a child's increasing risk of developing the neurological symptoms of autism after receiving increasing amounts of thimerosal.
Graph 3: Relative risk - 95 % CI of Autism after different exposure levels of thimerosal at 3 months of age, NCK & GHC (see www.vaccineinfo.net/autismHg.htm to view graph)
Waters pointed out that the confidential study's lead author, Thomas Verstraeten, has since left the Centers for Disease Control and is now employed by GlaxoSmithKline, a manufacturer of thimerosal-containing vaccines for many years that is a defendant in numerous suits pending nationwide. "We have asked GlaxoSmithKline to provide Mr. Verstraeten's deposition in order to understand if conflict of interest issues may have played a role in the CDC's decision to keep this report confidential, and specifically, their failure to reveal it to the Institute of Medicine."
Waters called the report's contents and the fact that it was kept from the public as "shocking, but unfortunately not surprising, given the political influence of pharmaceutical companies and the tremendous liability they face if they are forced to compensate thousands of families for the costs of care that these children require." Waters added that "no amount of money can give these children back the potential that they were born with, and no amount of money will comfort the parents that watched helplessly as their children literally just slipped away." The purpose of the lawsuits his firm is currently prosecuting, said Waters, is "to bring to the surface the truth on this issue, a truth that government agencies seem unwilling to admit, perhaps for fear that parents will stop vaccinating their children, and to force the companies that profited from this disastrous mistake to shoulder the responsibility that so many families now bear on their own, often without even the aid of health insurance benefits."
Media inquiries should be directed to Melissa Miles at 214-357-6244. Client inquiries should be directed to Victoria Gibson at 800-226-9880, or to the firms listed below.
Other firms working with Waters & Kraus to prosecute individual cases involving thimerosal exposure are:
ANDERSON & KRIEGER, APLC
40925 County Center Drive, Suite 210
Temecula, California 92591
Telephone: 909-296-5090
DOGAN & WILKINSON
726 Delmas Avenue
Pascagoula, Mississippi 39567
Telephone: 228-762-2272
DORAN & MURPHY, LLP
1234 Delaware Avenue
Buffalo, New York 14209
Telephone: 716-884-2000
EVERT & WEATHERSBY, L.L.C.
3405 Piedmont Road, Suite 225
Atlanta, Georgia 30305-1764
Telephone : 404-233-8718
HENDRICKSON & LONG
214 Capital Street
P.O. Box 11070
Charleston, W. VA 25339
Telephone: 304-346-5500
JONES, MARTIN, PARRIS, & TESSENER LAW OFFICES, PLLC
410 Glenwood Ave., Suite 200
Raleigh, North Carolina 27603
Telephone: 919-821-0005
LEACH, SCHWARZ & STRASSBERG
11 Bala Ave.
Bala Cynwyd, Pennsylvania 19004
Telephone: 610-668-7964
MARTZELL & BICKFORD
338 Lafayette Street
New Orleans, Louisianna 70130
Telephone: 504-581-9065
WISE & JULIAN, PC
3555 College Avenue
Alton, Illinois 62002
Telephone: 618-462-2600
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Studies Fail To Disprove Autism Link To MMR Jab
[By Lorraine Fraser in today's Sunday London Times.]
http://www.portal.telegraph.co.uk/news/main.jhtml?xml=%2Fnews%2F2001%2F12%2F09%2Fnjab09.xml <-- address ends here.
A report commissioned by the [British] Government has concluded that the possibility of MMR vaccination causing autism in susceptible children cannot be ruled out on the current evidence.
The review, from the Medical Research Council, will say the theory that the triple measles, mumps and rubella jab is to blame in some autistic children has not been proved scientifically.
However, it will add that epidemiological studies so far of MMR have been too imprecise to rule out the prospect of the vaccination being involved in a small number of cases.
The findings, to be made public next week, will create difficulties for Alan Milburn, the Health Secretary, who asked the MRC last March to look at all available evidence on the causes of autism and identify any gaps in present knowledge.
His officials at the Department of Health have heavily publicised studies that failed to link MMR and autism in their attempts to convince parents there is no risk.
The MRC's report comes after The Telegraph revealed how the doctor who first voiced fears about the safety of MMR, Dr Andrew Wakefield, has been forced out of his job at the Royal Free and University College Medical School in London.
Dr Wakefield claims to have identified nearly 200 children with a new combination of bowel disease and autism and has pledged to continue his efforts to find out whether their double illness has been triggered by the childhood injection. He disclosed last weekend that his university employers had asked him to leave because his research was unwelcome.
The Department of Health insists parents have no need for concern over the safety of MMR (recommended for babies and four-year-olds) and officials have accused Dr Wakefield of needlessly damaging parents' confidence in the vaccination, leaving children at risk of the illnesses.
However, the report of the MRC Review Group, headed by Eve Johnstone, professor of psychiatry at the University of Edinburgh, will raise new questions as to why the doctor has been ostracised by the medical establishment.
While it offers no support for Dr Wakefield's theory that measles virus from the MMR vaccine may colonise the gut of susceptible children and cause bowel effects which result in a chemical imbalance, leading to autism, The Telegraph understands the report will nevertheless make clear that more research is needed before the hypothesis can be either confirmed or refuted.
The document, which has been sent to the Department of Health prior to publication, is expected to argue that the cause of autism may differ between individuals, and future research must try to take account of factors such as genetics, environmental exposures before and after birth, infections, and the development of the child's immune system.
In particular, it will take issue with a Finnish study of three million children which has been widely reported as proof that MMR does not cause bowel disease or autism.
The MRC conclusions agree with a report from the Institute of Medicine in the US, which backed the use of MMR but also said research so far could not exclude the possibility that MMR may be damaging some youngsters.
Dr Timothy Buie, a specialist at Harvard General Hospital, has also announced that he found inflammation of the bowel identical to that described by Dr Wakefield in 15 of 89 autistic children seen at his Massachusetts clinic.
He said: "These children are ill, in distress and pain, and not just mentally, neurologically, dysfunctional."
Dr Wakefield's departure from the Royal Free Hospital has devastated parents of children involved in his studies, who are demanding assurances that their youngsters will continue to be looked after by the north London hospital.
Dr Wakefield agreed to stand down after a two-year struggle to stay in his post, hoping that this would relieve the "political pressure" on clinical colleagues responsible for day-to-day care of the sick children.
Paediatric gastroenterologists at the Hampstead hospital have developed considerable expertise in relieving the children's bowel pain and related symptoms, but some sick children are having to wait up to 18 months to be seen.
Last week angry families established a lobby group, Autism Research Campaign for Health (ARCH), to push for greater recognition of their children's problems.
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Harvard Clinic Scientist Finds Gut/Autism Link, Like Wakefield Findings
Dr. Timothy Buie, a pediatric gastroenterologist from Harvard/Mass General Hospital has performed over 400 gastrointestinal endoscopies with biopsies, as well as evaluation of digestive enzyme function in children diagnosed with autism and finding a connection. The results of his testing are similar to the observations made by Dr. Andrew Wakefield regarding the presence of chronic inflammation of the intestinal tract, although the incidence was noted to be less frequent in his group.
Dr. Buie announced his findings last Saturday at the Oasis 2001 Conference for Autism in Portland, Oregon, the day before the announcement of Wakefield's forced departure from Royal Free in the UK.
The biopsy results indicated the presence of chronic inflammation of the digestive tract including esophagitis, gastritis and enterocolitis along with the presence of Iymphoid nodular hyperplasia in 15 of 89 children. Additionally the results of the enzyme testing of Dr. Buie's patients paralleled that of Dr. Karoly Horvath and colleagues at the University of Maryland School of Medicine. Dr. Buie found that the autistic children he examined showed disaccbaride/glucoamylase enzyme levels below normal. Some 55% of these children had lactase deficiencies (which breaks down lactose in milk) as well as deficiencies of the enzyme sucrase (responsible for digestion of table sugar).
The findings also lend support to anecdotal reports of improvement of some autistic children on wheat and dairy (gluten, casein) free diets. Buie says that Harvard wants to do research into the use of protein enzyme supplements, which aid in the digestion of wheat and milk products for treatment.
Buie echoed the opinion of other a growing number of clinical researchers and practitioners treating autistic patients, "these children are ill, in distress and pain, and not just mentally, neurologically dysfunctional."
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http://www.gastrohep.com/freespeech/freespeech.asp?id=72#comments
Measles-containing vaccines and IBD.
Andrew Wakefield, 02 January 2002
In an ironic twist, investigators from the Centers for Disease Control and Prevention (CDC) and the Vaccine Safety Datalink (VSD) Project have confirmed an association between measles-containing vaccines (MCV) and inflammatory bowel disease. Specifically, they have also determined how age at exposure to an MCV may be important in determining the type of inflammatory bowel disease - Crohn's disease or ulcerative colitis - that develops [1].
Before the American Society of Microbiology's millennium meeting, Davis et al. reported a retrospective case-control study in which cases (n = 142) with either Crohn's disease, or ulcerative colitis, were compared with unaffected controls (n = 432). The exposure of interest was to an MCV.
When performing the power calculations to determine the necessary size of the study, Davis et al. assumed an MCV-exposure rate of 70%. In actual fact, the exposure rate was 93-94%, revealing a fundamental flaw in the study - overmatching.
Exposure of cases and controls to an MCV was so similar that their study, as designed, would never have detected a risk for inflammatory bowel disease, even if this risk were real.
Although these crucial data were presented to the American Society for Microbiology (at the Interscience Conference on Antimicrobial Agents and Chemotherapy in November 2000), they received no comment in the subsequent paper published in Arch Pediatr Adolsce Med. An explanation is clearly required.
In order to determine whether exposure to an MCV is or is not a risk for inflammatory bowel disease, at the level identified previously [2], power calculations reveal that they would have required at least 3 times as many cases and controls as were included in the study.
The correct power calculations were readily performed using the Epi.Info package, downloaded from the CDC website.
Age at exposure and risk
In a recent Israeli study, exposure to measles virus was shown to be associated with an increased risk for Crohn's disease [3]. In addition, measles virus (including vaccine-strain virus) has been amplified and sequenced from intestinal tissues of children with inflammatory bowel disease [4]. However, in the etiology of inflammatory bowel disease, it is likely that it is the pattern of exposure to measles that is more important than exposure per se.
Of interest in the Davis study, therefore, was the observation of an association between age at exposure to an MCV (excluding MMR) and the type of inflammatory bowel disease that develops [1]. This observation is entirely consistent with previously reported data, and supports a role for atypical measles virus infection in the etiology of inflammatory bowel disease. Such a claim should not be made lightly, and therefore it is worth reviewing the background to this thesis, that has been described in detail elsewhere [5]-[7].
Age at exposure to natural measles infection is an important determinant of both acute and delayed outcome.
Early measles infection has been reported as a risk factor for delayed disease, including subacute sclerosing panencephalitis (SSPE) and IBD [8]-[10]. For IBD, however, the situation is more complex still; the risk associated with measles virus includes, for example, concurrent exposure to measles and mumps infections in childhood [7] [11].
Studies have used the UK's birth cohort data (British Birth Cohort study 1970 [BCS 70] and the National Child Development Study [NCDS]), two population-based, nationally representative, and powerful epidemiological instruments. These have shown that, within an early window of risk (measles exposure < 6 years of age) [5], other characteristics of the acute measles exposure determine both the risk and phenotype of IBD that develops.
Younger age at infection (high birth order, e.g. two or more older siblings) (Fig 1) and younger age at exposure to concurrent measles and mumps infection (Fig. 2) are a risk for ulcerative colitis.
Within this early window of risk, older age at infection (low birth order, e.g. no older siblings) (Fig. 1) is associated with an increased risk of Crohn's disease. Higher mean age at concurrent measles and mumps exposure (Fig. 2), and higher age at monovalent measles vaccination (Fig. 3) are also associated with an increased risk of Crohn's [12][13].
Fig 1
Fig 2
Fig 3
In the BCS 70 cohort, the age of concurrent measles and mumps infection appeared to determine the risk of whether Crohn's disease or ulcerative colitis developed in an individual. For Crohn's disease, the mean age of exposure was greater than for ulcerative colitis. This difference was statistically significant (p = 0.038).
Fig 4
Data for the birth order/family structure versus risk of Crohn's disease or ulcerative colitis were then examined to see if this influenced the age of concurrent measles/mumps infection, as predicted by our hypothesis. This states that those with no older siblings (low birth order) should experience concurrent infections later, whereas those with two or more older siblings (high birth order) should experience the concurrent infection earlier.
The data shown above in Figure 4 indicate that the differential risk for concurrent infection according to number of older siblings is statistically significant (p<0.001). Data are adjusted for sex and socio-economic status.
The next question that we addressed was the issue of whether age of exposure to monovalent measles vaccine (the only measles vaccine available in the 1970s in the UK) influenced the risk of IBD in the BCS 70 cohort.
The hypothesis predicted that older age at measles vaccination, within the early window of exposure (0-6 years), would be a risk for Crohn's disease. This is indicated by the data shown in Figure 5.
Fig 5
In this cohort, age at exposure to monovalent measles vaccine, including and excluding those with concurrent measles and mumps infections, appears to be associated with risk of Crohn's disease. This was when adjusted for sex, social class of father at birth, and crowding.
Children exposed the vaccine at an older age are at greater risk (p for trend = 0.017). This is consistent with the fact the response to the vaccine virus is a function of age and, possibly, influences of maternal immunity.
The numbers of cases are small, and therefore independent corroboration was required. This was provided by the Davis study, as shown below.
Fig 6
The Davis study identifies that those exposed to an MCV (excluding MMR) at a younger age (< 12 months) appear to be protected against Crohn's disease, but at excess risk of ulcerative colitis. Conversely, older age at exposure is a risk for Crohn's disease, but protective against ulcerative colitis. This is exactly as predicted by the previous data and the a priori hypothesis.
Analysis of the raw data is required in order to establish whether or not these trends are statistically significant.
The effects of the characteristics of the exposure are likely to reflect age- and dose-dependent influences upon immune responses to the virus that are consistent with models of immunological tolerance, as proposed previously [5]-[7].
The study of Davis et al. provides valuable independent confirmation of a possible association between age at measles exposure and the type of IBD that develops.
What needs to be explained, beyond these observations, is the current upsurge of IBD in children, including Crohn's disease, ulcerative colitis, and the recently described autistic enterocolitis.
Questions arising:
Were the power calculations for the study, as reported [1], based upon an assumed MCV exposure of 70% in cases and controls, as presented in the original data set?
If the answer is 'no', please would Davis et al. provide the revised assumptions and power calculations.
If the answer is 'yes', then having performed power calculations for the size of the study based upon an estimated vaccine uptake of 70%, and subsequently finding an actual uptake of 93-94%, what steps, if any, were taken to reconcile this discrepancy prior to proceeding with the study?
Why were the power calculations, as presented to the American Society for Microbiology, not presented in the paper?
If the answer to question 1 is 'yes', and if no steps were taken to reconcile the discrepancy, why was this not described in the paper as published?
If the answer to question 1 is 'yes', then, based upon the obvious flaw of overmatching, do the authors still consider the conclusions to be valid?
References
Davis RL, Kramarz P, Bohlke K et al.. Measles-mumps-rubella and other measles containing vaccines do not increase the risk for inflammatory bowel disease: a case-control study from the Vaccine Safety Datalink Project. Arch Pediatr Adolsce Med 2001; 155: 354-9.
Thompson N, Montgomery SM, Pounder RE, Wakefield AJ. Is measles vaccination a risk factor for inflammatory bowel disease. Lancet 1995; 345: 1071-4.
Lavy A, Brodie E, Reif S et al.. Measles is more prevalent in Crohn's disease patients. A multicentre Israeli study.Dig Liver Dis 2001; 33: 472-6.
Halsey NA, Hyman SL. Measles-mumps-rubella vaccine and autistic spectrum disorder. Pediatrics 2001; 107: 1-23.
Wakefield AJ, Montgomery SM, Pounder RE. Crohn's disease: the case for measles virus. Ital J Gastroenterol 1999; 31: 247-54.
Wakefield AJ, Montgomery SM. Measles virus and inflammatory bowel disease: an unusually tolerant approach. Am J Gastroenterol 2000; 95: 3-5.
Montgomery SM, Morris DL, Pounder RE. et al.. Paramyxovirus infections in childhood and subsequent inflammatory bowel disease.Gastroenterol 1999; 116: 796-803.
Ekbom A, Adami HO, Helmick CG, Jonzon A., Zack MM. Perinatal risk factors for inflammatory bowel disease: a case-control study. Am J Epidemiol 1990; 132: 1111-19.
Ekbom A, Wakefield AJ, Zack M, Adami HO. Perinatal measles infection and subsequent Crohn's disease. Lancet 1994; 344: 508-10.
Pardi DS, Tremaine WJ, Sandborn WJ et al.. Early measles virus infection is associated with the development of inflammatory bowel disease. Am J Gastroenterol 2000; 95: 1480-5.
Montgomery SM, Bjornsson S, Johannsson JH, et al.. Concurrent measles and mumps epidemics in Iceland are a risk factor for later inflammatory bowel disease. Gut, 1998; 42: A41.
Montgomery SM, Pounder RE, Wakefield AJ. Age of older siblings and inflammatory bowel disease. Gut 1999; 44: A29.
Montgomery SM, Twamley SI, Morris DL, et al.. Birth order influences IBD risk and phenotype. Gut 1999; 44: A29.
http://www.gastrohep.com/freespeech/freespeech.asp?id=72#comments
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Silent Epidemic: Autism
BR doctor blames immunizations for dramatic increase in autism cases
By TED GRIGGS
Advocate features writer
Advocate staff photo by Patrick Dennis Shelley Reynolds, left, and Jeana Smith head Unlocking Autism, an organization dedicated to raising awareness about the disability.
Shelley Reynolds' son Liam was perfectly normal from birth. He rolled over, he crawled, he walked, he talked, all on schedule. At 13 months, Liam learned the "Hokey Pokey." He knew the words to "The Itsy Bitsy Spider."
Every morning on the way to daycare, he and Shelley sang "Old MacDonald Had A Farm." Liam's part was the animal sounds. At daycare, he practically lived in the sandbox.
And then virtually overnight, Liam's personality changed. He stoppd making eye contact. His words twisted and turned around on themselves. When he tried to say "fish" it came out "sheee."
Liam stopped singing. He stopped talking. He stopped sleeping. The touch of certain fabrics or textures tormented him. He ripped off his clothes as soon as his parents dressed him.
When the Reynolds took him to the beach that summer, Liam screamed bloody murder every time his feet touched the sand.
Eventually, Liam was diagnosed with autism. It's a life sentence. There is no cure.
Now Shelley Reynolds, like thousands of other moms with autistic children, lives with a nauseating possibility: that the shots Liam got, the regularly scheduled vaccinations designed to protect his health, may have caused his disability.
Reynolds is one of many who believe childhood vaccinations and autism spectrum disorder are linked. Jeana Smith of Walker is another. Smith has identical twin sons. One is autistic.
"Everybody thinks that if they ignore it, somehow it's going to go away, or this is going to stop happening, and that is simply not the case," Smith said.
The numbers of autistic children are rising. U.S. Department of Education records show the number of autistic students increased nationwide by more than 11,000 from the 1998-99 to the 1999-2000 school year. A similar increase was reported between 1997-98 to 1998-99. Recent studies in New Jersey and Sweden showed prevalence rates for autism spectrum disorder as high as 1 in 150 to 170 children.
"There's enough people for this to be a national emergency," Smith said. And it's going to be expensive. Education costs for autistic children can run $40,000 a year or more.
For now, the vaccine-autism link remains a controversial and scientifically unproved theory. And the Baton Rouge area continues to be the home of some of the theory's fiercest defenders. Pediatrician Stephanie Cave's success in treating autistic children is probably the reason.
Her clinic cares for more than 1,000 autistic children. Parents swear by her treatment plan, which removes toxic metals from her patients and balances their body chemistry.
Smith and Reynolds credit Cave's treatment regimen for their sons' recovery.
Cave has written a book that lays out some of the possible connections between childhood immunizations and increased rates of autism, asthma, diabetes and learning disabilities. In What Your Doctor May Not Be Telling You About Children's Vaccinations, Cave attempts to answer parents' questions about vaccine safety and immunization schedules. The book also spells out steps families can take to ensure their children's safety.
Cave and others say the rise in autism coincided with an increase in the number of required childhood vaccines. The recommended childhood immunizations tripled in the 1980s and '90s. Many of the vaccines contained high levels of mercury.
The premise's backers believe it's no coincidence that behaviors common among autistic children closely resemble the symptoms of mercury poisoning.
The theory goes something like this:
Until recently, many childhood vaccines contained thimerosal, a preservative that's 50 percent mercury. Mercury is highly toxic. An infant less than 4-6 months old can't get rid of it. The poison builds up in his body, unleashing a host of complications.
Mercury lodges in, and damages, the exact areas of the brain affected by autism: the cerebellum, amygdala and hippocampus. These areas affect coordination, emotions and memory.
Mercury also alters a child's immune and digestive systems. In these children's damaged bodies, something as simple as an ice cream cone or a bowl of spaghetti can produce the same effect another person would get by injecting morphine.
Some researchers also believe that injecting the measles-mumps-rubella vaccine into a child with a weakened immune system causes more digestive problems, and may even trigger autism.
An alternative, scientifically proven view
Health care's heaviest hitters -- the Centers for Disease Control and Prevention, the National Institutes of Health, the Institute of Medicine, the Food and Drug Administration, the American Academy of Pediatrics, the American Academy of Family Physicians, and pharmaceutical manufacturers -- disagree.
All say the same thing: Vaccines are safe.
And public health agencies continue to support this view.
Last month, the Institute of Medicine's Immunization Safety Review Committee concluded that the current evidence neither proves nor disproves a link between thimerosal and autism spectrum disorder.
However, the committee also concluded that the hypothesis that mercury in vaccines may be related to autism is "biologically plausible." And the committee recommended the use of thimerosal-free DTaP, hepatitis B and Hib vaccines, despite the fact that supplies of thimerosal-containing vaccines are still available.
Backers of the vaccine-autism link see this as a crack in the bureaucratic dam. They say the vaccine committee report strengthens their position.
But Committee chair Dr. Marie McCormick said the recommendation follows an established public health policy to reduce cumulative mercury exposures.
There is no proof that the thimerosal in vaccines is dangerous, McCormick said. If thimerosal-free vaccines are not available, thimerosal-containing vaccines should be used.
The idea that thimerosal may be linked to autism is "very, very hypothetical" at best, and some basic assumptions of the theory appear flawed, McCormick said.
The vaccine-autism model assumes that an infant doesn't metabolize any mercury for six months, McCormick said. "That's hard to believe."
One of the standard texts in neonatology states that bile secretion, which helps metabolize most mercury, begins at 12 weeks of gestation.
Information presented to the committee also runs counter to the idea that babies' bodies can't shed mercury, she said. Preliminary data from the National Institute of Allergy and Infectious Diseases indicates that 2-month-olds promptly eliminate mercury after immunization.
McCormick is chair of the Department of Maternal and Child Health in Harvard School of Public Health. She and many other health officials worry about what will happen if parents grow too frightened to vaccinate their children.
The threat posed by diseases remains very real, McCormick said, as do the consequences of ignoring immunization recommendations. People will become ill and some will die if they are not vaccinated.
Public health officials also discount the jump in the numbers of children with autistic spectrum disorder and more vaccines.
The diagnosis for autism has changed drastically during the last 30 years, McCormick said. Federal laws have made educating children with special needs more important.
People are much better informed today about disabilities, and they do a better job of identifying children with autism spectrum disorder.
The idea that autism is increasing because of better diagnoses strikes Cave as ridiculous and possibly disingenuous.
"If you had a child that was developing normally for 15-18 months who lost eye contact, speech and started mutilating himself, who wouldn't sleep, wouldn't eat and had chronic diarrhea, do you think the child would go undiagnosed?"
My son is not an anecdote
The issue is pitting parents against pediatricians. Part of the problem is the way scientists present their findings. The language is as precise as possible, spelling out in detail what is known and not known.
Guessing isn't a widely admired technique in the research community. Scientists don't base their reputations, their very credibility, not to mention their funding, on word of mouth, on unproved anecdotal evidence (even if the number of these anecdotes/autistic children has doubled or tripled in the last decade and anecdotes are piling up at record pace). Dozens and dozens of factors must be considered, tested, and accounted for, and other researchers must be able to reproduce these results.
But a mother who divides her day by therapies -- speech, physical, occupational, behavior modification, and all the time she puts into repeating those lessons on her own -- a mother who may have slept only two or three hours a night for the last two years because that's all her baby sleeps, a mother whose child shrieks if his bare feet touch sand because he can't stand the texture, a mother who has seen the "Hokey Pokey," "Old MacDonald," "The Itsy Bitsy Spider" and finally even her name, Mama, all the milestones that marked her child's growth, every memory she holds dear wiped away, evaporated, just gone, this woman doesn't want her experience, her child's disability (which she more than likely believes was preventable), casually dismissed by a researcher as an anecdote. A tale told by idiots. A sound and fury signifying nothing.
"What's worst is when they sit there and try to pacify you and say, 'I'm really, really sorry for what happened to you, but vaccines don't cause autism,'" Smith said. "Don't patronize me. Don't tell me that I'm crazy. è I sat there and watched my kid slip away right underneath me."
Some things never leave you
Smith and Reynolds say will never get over the damage they believe vaccines did to their sons.
Reminders of what her son has lost surface from time to time, Smith said. The ball game Jacob can't attend because it's too much stimulation. Missing the family get-together at Christmas for the same reason.
Maybe Jacob's twin Jesse came home excited about the new sports team he's going to join, other kids in his class and their birthday parties.
"You think, 'Gosh, I wonder if Jacob even really has someone that's his best friend,'" Smith said. "I wonder if they're picking on him at recess, or do they make fun of him?"
You learn to cope, she said, because there's no other choice.
So the women channel their anger and their energy into Unlocking Autism, a national nonprofit they started to raise awareness about autism.
The duo has gathered nearly 6,000 pictures of autistic children. Ultimately, they hope to round up 58,000 portraits, the equivalent of one-tenth of the United States' autistic residents.
Reynolds said they hope more publicity about autism will translate into more research dollars and more favorable laws.
Still, Smith and Reynolds consider themselves lucky.
Jacob began making eye contact and speaking in three-word sentences just days after Cave began treating him. Jacob is now in the first grade and doing pretty well. He eats lunch in the cafeteria with all the other kids. He goes to P.E. and music classes. He wants to be a zookeeper.
Liam is in a class for autistic children. He is a little behind his classmates in speech skills. But Liam talks and asks questions. It's hard to pick him out of a crowd. And the milestones are again piling up.
A few weeks ago, Liam and his mom went to the Mall of Louisiana to watch the circus. Liam asked for permission to sit up front, with all the other kids. When a clown asked audience members who wanted to come out and dance in the center of the ring, Liam volunteered.
And then Liam did something Shelley hadn't seen in four years: the Hokey Pokey.
That's what it's all about.
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DISCLAIMER: All information, data, and material contained, presented, or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of the publisher, and is not to be construed or intended as providing medical or legal advice. The decision whether or not to vaccinate is an important and complex issue and should be made by you, and you alone, in consultation with your health care provider.