SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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January 29, 2003 Autism Freedom Train Rolls Here - All Aboard!

EDUCATION

* ALERT! Wrightslaw: "Spec Ed Funding Threatened - Kids Need Our Help!"

RESEARCH

(Abstracts – contains technical language)

* The Individual Meaning Of Daily Activities For Autistic Children

* Reduced Thalamic Volume In High-Functioning Individuals With Autism.

PUBLIC HEALTH

(Two key Autism and Vaccine Briefs.)

* Thrower's Collected Notes on the Havocs of Autism

* Homeland Security and Vaccine Compensation

COMMENTARY

* On the Presidents State of the Union Address

EDUCATION

ALERT! Special Ed Funding Threatened - Kids Need Our Help!

[This alert comes from Pete Wright of Wright's Law.]

On January 23rd the Senate passed a spending bill that increases special education funding significantly. This bill puts the Individuals with Disabilities Education Act (IDEA) on track for full funding in six years. The Senate also added $5 billion as a block grant.

* Gains May be Lost

Proposals by the Bush administration and a bill passed by the House would underfund the NCLB and IDEA. A House-Senate Conference Committee will take up the Senate and House spending bills this week (January 26-30).

Kids don't vote. Parents, family members, teachers, and child advocates must speak up on their behalf.

* Take Action - Contact your U.S. Representatives and Senators

Many states are facing severe budget shortfalls. States and local school districts need additional funding to improve special education and ensure that No Child Left Behind gets off to a good start.

You will make it more likely that the Senate funding bill will pass if you contact your members of Congress. When you write to your Representative or Senator, your letter will be more effective if you describe a real funding need in your school, classroom, or district.

You can send your letters to Congress through the Legislative Action Center at the National Center for Learning Disabilities:

When you enter your zip code, you go to a page with your Senators' and Representative's names. You can copy your personal letter into the text box - very easy!

Writing a short letter will only take a few minutes of your time. Be a hero - speak up for the kids!

Lack confidence in your letter-writing skills? Read "12 Rules for Writing Great Letters:"

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IDEA & NCLB

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RESEARCH

Understanding the Individual Meaning Of Daily Activities For Autistic Children 'Using participant observation to study the meaning of occupations of young children with autism and other developmental disabilities'

ds=12549892&dopt=Abstract .

Spitzer SL.

Autism and Adaptive Learning Programs, Children's Services Center, Casa Colina Centers for Rehabilitation, 255 E. Bonita Avenue, PO Box 6001, Pomona, California 91769-6001, USA. drspitzer@earthlink.net

Understanding the individual meaning of daily activities for children with developmental disabilities such as autism is both important and challenging for researchers and practitioners.

Rigorous participant observation offers a method for developing this knowledge base by including the child's perspective.

Through literature and examples from an ethnography of young children with autism, this article illustrates the application of participant observation to children with developmental disabilities.

Specific strategies can promote valid interpretations despite developmental, linguistic, and perceptual differences between adult researchers and child participants.

PMID: 12549892 [PubMed - in process]

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Reduced Thalamic Volume In High-Functioning Individuals With Autism.

ds=12547467&dopt=Abstract

Yale Child Study Center, Yale University (KDT, AK, BPR, FRV, DC, RTS), New Haven Connecticut, USA

In this study, specific consideration is given to a role for the thalamus in autism.

A volumetric analysis of the thalamus was conducted using magnetic resonance imaging, based on segmentation of continuous 1.2 mm(3) coronal images.

The sample consisted of 12 high-functioning individuals with autism, mean age of 21.0 years (SD = 10.4) and mean IQ of 106.4 (SD = 18.3).

Normal control subjects were selected to match this group; the mean age was 18.1 years (SD = 6.3); mean IQ was 108.8 (SD = 15.6).

Unadjusted mean thalamic volume was not significantly different; however, there were significant differences in the relationship between thalamic volume and total brain volume (TBV).

The correlation was strong and positive in the control group but statistically nonsignificant in the autism group.

Group differences were found when adjustments were made for TBV, achieved by grouping subjects' measurements on this variable using a split median procedure.

Mean thalamic volume was significantly reduced in the autism group relative to normal control subjects, specifically within the high TBV group.

The increase in thalamic volume with increase in TBV was not seen in autism, suggesting underdeveloped connections between cortical and subcortical regions and indicating a need to examine this structure further.

PMID: 12547467 [PubMed - in process]

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PUBLIC HEALTH

Thrower's Collected Notes on the Havocs of Autism

MMR and Acquired Autism

(Autistic Enterocolitis)

- A Briefing Note

By David Thrower

February 2003

Serial Part I

The "Danish Study"

This entire document is a classic example of something "growing like Topsy". To try to keep track of each study for/against the MMR/autism link as they came out, each was summarised into a few bullet-points. More and more material appeared, and so each fresh study was distilled into some simple notes. Thanks to the efforts of many other people, more and more information was added. Particularly useful was the autism data supplied by Ray Gallup from the US IDEA system, but there were many other sources too, too numerous to acknowledge individually. Eventually, we have arrived at a briefing note of freight-train length, but I still find it useful, and I hope others find it useful too. Of course, it's out of date as soon as it appears, and so it will be continually updated as fresh studies emerge.

Study by Madsen, Hviid, Vestergaard, Schendel, Wohlfarht, Thorsen, Olsen and Melbye, A Population-Based Study of Measles-Mumps Rubella Vaccination and Autism, New England Journal of Medicine, November 2002, 347: 1478-1482.

This study paper attracted a great deal of attention, largely uncritical, when it was published towards the end of 2002, mainly because of its claimed size and, of course, its conclusion that there was no evidence of any MMR/autism link. The paper featured:

* A retrospective cohort study of all children born in Denmark from January 1991 through till December 1998

* MMR vaccination data obtained from the Danish National Board of Health. Information on the children’s autism status was obtained from the Danish Psychiatric Central Register, which contains information on all diagnoses received by patients in psychiatric hospitals and outpatient clinics in Denmark

* Of the 537,000 children in the cohort, 441,000 had received MMR. The study identified 316 children with a diagnosis of autistic disorder and a further 442 with a diagnosis of other autistic-spectrum disorder (total 758). (Note: 758 cases amongst 537,000 children represent a rate of 1 in 709, or 14 per 10,000).

* After comparing autism amongst vaccinated and unvaccinated children, the study concluded that there was no association between the age at the time of vaccination, the time since vaccination, or the date of vaccination and the development of autistic disorder.

After initial uncritical review by the press, this study received a very thorough analysis by the parents, notably Dawn Richardson of the US parents’ group PROVE and Sally Bernard of the group Safe Minds. Richardson’s and Bernard’s key criticisms were:

* One of the omissions of the study was its failure to consider the thiomersal issue. The parents’ view as at the end of 2002 was that the thiomersal aspect and the MMR aspect were interlinked in the pathogenesis of autism. Press reports confirmed that thiomersal was removed from Denmark’s vaccines prior to the birth-dates of the children in the study cohorts. It therefore remains unstudied as to whether a child’s immune response, inhibited by elevated mercury levels from thiomersal, has a lessened ability to respond to the measles virus in MMR. The Madsen study does nothing to address this.

* The Madsen study only focussed on MMR and not other vaccines implicated in autism

* The study (as noted elsewhere) failed to distinguish between different types of autism

* An epidemiological study of this scale would be unable to detect a potential connection between the persistence of measles virus in susceptible children and autism. The number of regressive-autism cases (out of 758) would be too small to give statistical power to any conclusions (note: in an epidemiological study, large numbers are needed. This criticism would not apply to a clinical study, such as conducted by Wakefield when at the Royal Free Hospital).

* The Madsen study paradoxically appears to imply support for a thiomersal role, since it suggests that autism in Denmark is at a much lower rate of incidence than in the US or UK

* Only psychiatric records were assessed - not medical records. There was no data on gastrointestinal symptoms. No cerebral spinal fluid or gastrointestinal samples were taken or analysed.

* The study covered eight birth cohorts, but two of these, born in 1997 and 1998, were only one or two years old when the data records were obtained by the study at the end of 1999. These age groups are too young in most cases to either have a diagnosis of autism or (probably) to have received MMR. Therefore, in these two cohorts, true autism rates will be underestimated, and vaccination rates over-estimated.

* Children who were in fact vaccinated were assigned to the unvaccinated group if they were diagnosed with autism before they had received MMR. This blurs the distinction between vaccinated and unvaccinated groups. It is not clear what effect this would have on the results.

* A number of the measures used to arrive at the conclusion that autism/ASD disorders were not associated with MMR are irrelevant, including age at vaccination with MMR, time interval between receipt of MMR and diagnosis of autism, and year of MMR vaccination.

* As the authors themselves acknowledge (page 1481), they had no information on the presence or absence of any family history of autism. There was considerable publicity in Denmark in 1993 on MMR/autism linkages. It is quite possible that those families with a history of autism went on to avoid MMR, undermining the study findings.

* The decision by the study team to register as autistic cases only those children who only met two strict diagnostic criteria could have meant that many affected children would have been excluded

* The study does show that MMR is not the cause of all autism - but no-one has ever suggested that it was

Comment: there are many shortcomings to this study. No child was evaluated for immune system dysfunction, inflammatory bowel disease or the presence of measles RNA in their blood, intestines or cerebral spinal fluid.

53. Paper, Neurologic Disorders after Measles-Mumps-Rubella

Vaccination, Makela, Nuorti and Peltola, Hospital for Children and Adolescents, Helsinki University Central Hospital, and Department of Infectious Disease Epidemiology, National Public Health Institute, Helsinki, Finland, published in Pediatrics, Vol 110 No. 5, November 2002, pp 957-963.

This was yet another retrospective study. The objective of the study was to assess whether an association prevails between MMR vaccination and encephalitis, aseptic meningitis and autism.

The study was based on the linkage of individual MMR vaccination data with a hospital discharge register. It was conducted amongst 535,544 one to seven year olds, who were vaccinated between November 1982 and June 1986 in Finland.

For encephalitis and aseptic meningitis, the numbers of events observed within a three-month risk interval after vaccination were compared with the expected numbers estimated on the basis of occurrence of encephalitis and aseptic meningitis during the subsequent three-month intervals.

Changes in the overall number of hospitalizations for autism after vaccination throughout the study period were searched for.

In addition, hospitalizations because of inflammatory bowel disease were checked for the children with autism.

The results were:

* Of the 535,544 children who were vaccinated, 199 were hospitalized for encephalitis, 161 for aseptic meningitis and 352 for autistic disorders.

* In 9 children with encephalitis and in 10 with meningitis, the disease developed within three months of vaccination, revealing no increased occurrence within this designated risk period

* The study detected no clustering of hospitalizations for autism after vaccination

* None of the autistic children made hospital visits for inflammatory bowel disease.

The following criticisms of this study were offered by Dr. Ed Yazbak of New Jersey:

* The original Peltola study (from which this study has germinated) was completed by 1996, a full two years before the first autism/MMR paper was published by Wakefield et al in The Lancet, February 1998.

* Peltola stated unequivocally in a BBC interview that his 1996-completed study did not address autism as a possible outcome from MMR vaccination

* Subsequent authors have criticised the 1996-completed study as being irrelevant to proving an MMR/autism link, one way or the other. The Medical research Council review of 2001 admitted that the Finnish study by Peltola was not robust enough to be taken as conclusive evidence.

* The Makela study does not account for why 352 cases of autism were hospitalised at all. Autism is not usually a condition that in itself leads to hospitalisation.

Conclusion: despite the supposedly large scale of this study, its fundamental methodological flaws mean that it cannot be deduced from its findings that there is no link between MMR and autism.

NEXT: Autism in California

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Homeland Security and Vaccine Compensation

Briefing Paper prepared by The National Vaccine Information Center

What is the Vaccine Injury Compensation Program? The National Childhood Vaccine Injury Act of 1986, Public Law 99-660, was a landmark vaccine safety and compensation law, passed by Congress after five years of effort by the National Vaccine Information Center, the American Academy of Pediatrics, and several vaccine manufacturers.

Physician organizations and vaccine manufacturers were seeking fewer lawsuits and they asserted that this would help insure the availability of vaccines and result in reduced prices.

Parents were seeking a less expensive, less time consuming and emotionally draining alternative to a lawsuit. When the law was passed, parents who had pending lawsuits made a choice between the VICP and continuing their law suit. Parents insisted on preserving the right to go to court if the VICP ruled against them or the award was not sufficient to care for the injured child.

What other provisions were part of the law? Parents fought hard to have safety provisions as part of the law in an effort to prevent other children from suffering a vaccine injury or death. Compensation without prevention was not acceptable. 1. All doctors who administer vaccines must report vaccine reactions to federal health authorities. The Vaccine Adverse Events Reporting System (VAERS) was created as a centralized reporting system for vaccine adverse events. 2. All doctors are required to record vaccine reactions in the patient's permanent medical record, in an effort to prevent a child from being revaccinated after a previous reaction. 3. Doctors are required to keep a record of the date, manufacturer's name and lot number of the vaccines given, making it easier to obtain that information and assist in identifying especially reactive lots of vaccine. 4. Doctors are required to provide parents with written information prior to delivery of the vaccinations, in an effort to help parents make better-informed decisions. 5. The Federal Government is required to promote the improvement of existing vaccines and the development of safer vaccines; so fewer children would suffer an adverse event.

How is this connected to Homeland Security? The VICP has a very short statute of limitations (time in which to file a claim), of 3 years for a vaccine injury and 2 years for a death resulting from a vaccination. In the past ten years autism has increased by 500% in most states and some parents associate their child's autism with an MMR vaccine reaction or with Thimerosal, a preservative used in some vaccines for many years. Thimerosal is a mercury derivative (a known neuro-toxin) used in killed and recombinant vaccines to prevent the growth of bacteria in multi-dose vials. In 1999 the government recommended drug companies remove Thimerosal from vaccines and produce single-dose vials, which would not require a preservative. A diagnosis of autism is very rarely made in time for a child to qualify for the VICP. This has led to a large number of lawsuits that are outside of the VICP that are in state court. Most states have ruled against these cases due to the jurisdictional issue.

On November 13, 2002, the Homeland Security Bill was passed by the House of Representatives and sent to the Senate. Originally intended to set up a new Department of Homeland Security, the 484-page bill also provided for the biggest reorganization in government since 1947. The last four sections of the bill, (1714-1717) shielded the pharmaceutical industry from lawsuits for injuries caused by FDA-approved vaccines, such as mercury containing pediatric vaccines associated with the development of autism.

Senators Lieberman, Daschle and Byrd proposed an amendment to strike out the vaccine injury liability bailout but it was voted down 47-52. Reports have come out of last minute deals between the White House and rebellious republicans (Senators Snowe, Collins and Chafee) who threatened to vote for the Lieberman amendment. Promises were made that in the new Congress a bill would be passed that would allow existing lawsuits to continue but would bar all future lawsuits.

After much debate the Homeland Security Bill passed the Senate. The four-day debate was covered live on C-Span as Democrats and Republicans squared off on this last minute provision that really had nothing to do with Homeland Security. Articles ran on the front pages of major newspapers and headlined the evening news.

Why do we need to preserve the right to bring a lawsuit when we have the VICP? Children are required by law to be vaccinated before entering daycare, school or college. This is a medical procedure that carries a risk of injury or death and is performed on a healthy individual. There is great debate in the scientific community about which vaccines cause injuries and what those injuries are. It is going to take a long time for science to find all the answers. In the meantime, if even a small percentage of children are injured by mercury, the MMR or any other vaccine that our government requires parents to use, then those children should be entitled to compensation and fair treatment within the system.

It would be the greatest injustice to require vaccination by law, knowing that some children will be permanently brain-damaged or even die as a result and then to single out these children and their parents to taking away their right to common law protection from negligence or unreasonably dangerous products, and making them the only group who do not have the right to go to court. That is hardly real justice, nor good social policy.

The tort system serves to deter negligence and helps augment regulatory incentives for safety. Without the threat of a lawsuit if the VICP does not handle cases fairly or adequately, there is no incentive for drug companies to make their vaccines as safe as possible. The drug companies end up with a ready-made market and no liability.

What other provisions of the Homeland Security Act are troubling? Section 304 of the bill removed from the states their historic control over public health laws, including vaccination laws, and handed it over to federal health officials. This section allows the Secretary of DHHS to issue a "declaration" after concluding that "an actual or potential bioterrorist incident" or "other potential public health emergency" warrants the administration of "a substance or substances" to "individuals during the effective period of the declaration." The law provides for no exemptions to vaccination or medication and is expected to override state public health and vaccine laws which currently provide medical and/or religious exemptions to vaccination for school entry. This federal law also does not preclude the use of the U.S. military to enforce the administration of vaccines or other "substances" to individuals as ordered by the Secretary of DHHS.

The Homeland Security Bill also eroded laws preventing the federal government from conducting the people's business in secrecy, while creating new opportunities for federal employees to look into the private lives of their fellow citizens. Title 2 of the bill gives federal employees unchecked surveillance power to access and track every American's email, internet use, travel, credit card purchases, phone and bank records without a court order. The public's right to know how government operates was also severely curtailed in the bill with Section 214 gutting the Freedom of Information Act (FOIA), which has allowed the media and private citizens to obtain documents and transcripts of federal health agency meetings such as the FDA and CDC Advisory Committees which regulate vaccines and make vaccine policy.

What is the current status of Homeland Security revisions? On January 10, 2003, Senators Olympia Snowe (R-Maine), Susan Collins (R-Maine), and Lincoln Chafee (R-R.I.) announced that they had reached an agreement with Senate leadership to eliminate a provision aimed at limiting liability for vaccine manufacturers.

The agreement also calls on the Senate to consider and pass comprehensive reforms to the Vaccine Injury Compensation program in the next six months which could lead to a removal of lawsuits from the VICP if the award is not adequate or the case is lost.

In November, they secured the commitment of the Senate and House Majority Leaders, the Speaker of the House, and the Vice President to address their concerns in the Omnibus Appropriations bill to be considered by Congress later this month.

Attempted Legislative Changes: NVIC worked hard for the passage of a compensation program and we have continued to serve as the consumer watchdog on the implementation and use of the program. As of 12/31/02 there have been 7580 claims filed. Awards total $1.4 Billion while nearly 2 out of 3 claimants lose their case.

NVIC has been a staunch critic of the way the program operates and has worked hard for administrative and legislative changes. Beginning in 1999, Congressman Dan Burton, Chairman of the House Government Reform Committee investigated problems in the VICP. A number of issues were identified that led to the introduction of a bill in February 2002 by Congressman Dan Burton

(R-IN) and Congressman Henry Waxman (D-CA). The legislative reforms proposed by Burton/Waxman included:

· Extending the statute of limitations for filing a petition in the Vaccine Injury Compensation Program to six years and establishing a two-year window for families to file a petition if they were previously excluded from the Program by the existing statute of limitations. · Increasing the compensation for vaccine-related deaths to $300,000; · Increasing the compensation for lost earnings; · Including compensation for the costs of family counseling and

creating a guardianship;

· Including payment of interim attorneys fees and costs while a

case is under review.

In April 2002, Senator Bill Frist (R-TN), introduced a bill that would eliminate all class action vaccine lawsuits, eliminate loss of consortium claims, remove all state cases into federal court, not allow interim attorney fees, not allow a one-time look back provision, and provide the government alternate causes to help them disprove causation. Neither of these two bills were passed but portions of the Frist bill ended up in the Homeland Security Bill. All the more reason to suspect that Senator Frist will attempt to give the drug companies an exclusive remedy in the compensation program.

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COMMENTARY

By Mrs. Teri Small

On the Presidents State of the Union Address

The State of the Union Address made me wonder about how my country sets priorities.

$450 million for mentors for junior high students with no guidance – but not for my child….My child has vaccine-induced autism.

$600 million for drug addicts to receive treatment – but not for my child….My child has vaccine-induced autism.

Financial resources sent to educate the children in a hostile overseas nation….but the Federal Government hasn’t even yet come close to fully funding the IDEA.

The State of the Union Address promised that “Every child in America can read and learn and succeed in life”….but not for children with vaccine-induced autism.

“The miracle of recovery is possible – it could be you”….but NOT for my child….my child has vaccine-induced autism. His government has been striving to make sure that he does NOT have as good a chance at a healthier future, by limiting any compensation to a ridiculous amount that might not even cover his medical, educational, and other therapy costs until he is 10 years old!! What should he and his family do for the next 70 years?

The State of the Union Address offered compassion to those less fortunate – but not for children with vaccine-induced autism and their families. These families are derided by the government with accusations of “frivolous lawsuits,” when all they are trying to do is help their children have some semblance of a safe and healthy future. The parents must speak because their children have been silenced, but the government wants to silence the parents, too, by limiting their children’s rights through eliminating their right to efficient, adequate legal recourse.

The State of the Union Address offered encouragement for hopelessness – but not for children with vaccine-induced autism.

The State of the Union Address condemned partial-birth abortion, defending the rights of “infants at the very hour of their birth.” Yet the company that makes the poison that was injected into my tiny infant son’s body in a bolus dose on the very day that he was born, starting him on the catastrophic road to vaccine-induced autism, is defended by his government.

“We will not deny…we will not ignore….” But the government does. The government defends those companies responsible for vaccine-injury and ignores what they have done to these massive numbers of children. Why would this be? Could it be because of financial ties between pharmaceutical companies and the United States Government? Why is Washington so involved in defending the pharmaceutical companies? What had these innocent little children’s shattered lives to do with Homeland Security? And why is it rumored that Senator Frist will try to cut off the means to sufficient compensation to help these severely disabled children again later this year?

“Freedom is the right of every person….Liberty is God’s gift to humanity.” No, Mr. President…but not for my child, my child has severe vaccine-induced autism…his freedom, liberty, independence, free speech, childhood, health, and future have been stolen from him – beginning at the very day of birth.

Why has Washington gone to great lengths to defend the pharmaceutical companies? Who is the White House’s god? The White House cannot serve two. Is it God in Heaven, or the god of money?

- Mrs. Teri Small, Wilmington, DE

[Commentary opinions are those of the author and not necessarily shared by this publication. We welcome submissions to the editor for any topic related to autism. edit@doitnow.com .]

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