SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

The Autism Calendar, November 2002 Update is out!

________________________________________________________________

Wednesday, November 06, 2002 Promote Your Event - Free! - Send a

CALENDAR LISTING:

RESEARCH

* A Population-Based Study Of Measles, Mumps, Rubella Vax & Autism

* Food Additives Linked To Hyperactivity: Study

* Autism 'More Likely' In C-Sections

* Medicinal Cannabis Clears Crucial Trial

* Interagency Autism Coordinating Committee To Meet Nov. 22

EDUCATION

* Some Say Electronic Class Makes Grade

FORENSIC

* The Tragedy of David

* Readers' Posts

RESEARCH

A Population-Based Study Of Measles, Mumps, Rubella Vaccination & Autism

The New England Journal of Medicine will publish this study today or tomorrow, and it will be announced today on NBC News, tomorrow on ABC. Its purpose is to prove that there is not connection between vaccines and autism. Sally Bernard of SafeMinds (an autism advocacy group based in New

Jersey) received an advanced copy of the full paper and has had some time to digest it. She refutes the contention that "this study provides strong evidence against the hypothesis that MMR vaccination causes autism." One problem is they got the hypothesis not exactly right.

Says Bernard, "this is basically a good study (and we’re happy that people are taking the issue seriously and studying it), but it has a number of major problems that prevent it from drawing conclusions about the relationship between MMR and regressive autism which affects 10 to 20% of autistic children. It’s important to note that Dr. Wakefield and his team have never claimed that vaccination with the MMR was a causal factor for ALL cases of autism, only those with the regressive form of the disease (children who develop normally and then experience a number of medical

problems and become autistic). Perhaps the most important problem in the

study is that it was unable to analyze separately the children with regressive autism from all other children with autism. As a result, the study’s conclusion that it “provides strong evidence against the hypothesis that MMR vaccination causes autism” is most certainly overstated and likely to be wrong as it pertains to children with regressive autism.

ABSTRACT

NEJM Volume 347, November 7, 2002, Number 19

Kreesten Meldgaaro Madsen, M.D., Anders Hviid, M.Sc., M0gens Vestergaard, M.D., Diana Schendel, PH.D., Jan Wohlfahrt, M.Sc., Poul Thorsen, M.D., Jorn Olsen, M.D., and Mads Melbye, M.D.

Background

It has been suggested that vaccination against measles, mumps, and rubella (MMR) is a cause of autism.

Methods

We conducted a retrospective cohort study of all children born in Denmark from January 1991 through December1998. The cohort was selected on the basis of data from the Danish Civil Registration System, which assigns a unique identification number to every live-born infant and new resident in Denmark. MMR-vaccination status was 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. We obtained information on potential confounders from the Danish Medical Birth Registry, the National Hospital Registry, and Statistics Denmark.

Results

Of the 537,303 children in the cohort (representing 2,129,864 person-years), 440,655 (82.0 percent) had received the MMR vaccine. We identified 316 children with a diagnosis of autistic disorder and 422 with a diagnosis of other autistic-spectrum disorders. After adjustment for potential confounders, the relative risk of autistic disorder in the group of vaccinated children, as compared with the unvaccinated group, was 0.92 (95 percent confidence interval, 0.68 to 1.24), and the relative risk of another autistic-spectrum disorder was 0.83 (95 percent confidence interval, 0.65 to 1.07). 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.

Conclusions

This study provides strong evidence against the hypothesis that MMR vaccination causes autism. (N Engl .1 Med 2002;347:1477-82.) Copyright 2002 Massachusetts Medical Society.

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

_______________________________________________________

* * *

Autism 'More Likely' In C-Sections

Women who experience difficult births or deliver their babies by caesarean section are more likely to have an autistic child than women who had normal births, according to the largest study of its kind ever undertaken.

The West Australian research will be presented at an international autism congress in Melbourne next week.

The study of almost 4,000 children found autistic children are more likely to have experienced threatened abortions early in a pregnancy or gone into distress during labour.

Their mothers are more likely to be older, to have had epidural anaesthesia and to have had emergency or elective caesareans.

The study confirms the findings of smaller, or more limited, studies by Swedish and US researchers linking autism to obstetric difficulties. Emma Glasson, who conducted the study as a PhD project for the University of WA's School of Psychiatric and Clinical Neuroscience, said most children are not diagnosed with autism until about the age of three or four. "I looked at the before birth factor to see if there's anything unique to that group," she said. "We found as a group the autism kids were different."

Ms Glasson used the WA Maternal and Child Health Research Database to compare the birth records of the 465 children diagnosed with autism between 1980 and 1995 with the records of 1,313 randomly selected non-autistic children.

She also looked at 481 siblings of the autistic group and 1,634 siblings of the non-autistic group.

"Compared to the (non-autistic group), the autism cases experienced more difficulties during pregnancy, labour, delivery and during the neonatal period," she said.

"The autism group was characterised by increased maternal age, being first born, a threatened abortion before 20 weeks gestation, foetal distress and an elective caesarean."

Interestingly, brothers and sisters of the autistic group - while not autistic themselves - also have more complications than siblings of the non-autistic group, Ms Glasson found.

She said this suggested autism is the cause, rather than the result of, birth complications.

"The best explanation we can have at the moment is that there's a big genetic component," she said.

"It's thought that autism is caused by a large number of genes, and some of those genes will be shared with siblings.

"It may be an interaction effect with some of those genes causing problems in utero."

She stressed that women who had experienced a difficult birth or resorted to a c-section should not feel guilty about contributing in any way to their child's autism.

"I didn't find any evidence that any of these factors were directly causing autism," she said.

"Autism is unlikely to be caused by a single obstetric factor and the increased prevalence of obstetric complications are most likely caused by the underlying genotype or an interaction of the genotype and the (uterine) environment."

The World Autism Congress 2002 runs from November 10-14.

* * *

Food Additives Linked To Hyperactivity: Study

Additives in a lot of snacks can cause hyperactivity and even tantrums in young children, according to a British study.

The Asthma & Allergy Research Centre on the Isle of Wight analysed the effects of different additives on 277 three-year-olds. The additives are found in potato chips, candy and pop The additives were: tartrazine (E102) food colouring sunset yellow (E110) carmoisine (E122) colouring ponceau 4R

(E124) colouring sodium benzoate (E211) preservative The additives were given to the children in a single drink. Doses were similar to ones found in common foods.

For two weeks, the children drank fruit juice dosed with 20 mg in total of artificial colourings and 45 mg of the preservative. For the other two weeks, children drank fruit juice identical in appearance but without the additives.

Parents then filled reports assessing behaviour such as "fiddling with objects," "disturbing others," "difficulty settling down to sleep," "concentration" and "temper tantrums."

Researchers said "significant changes in children's hyperactive behaviour could be produced by the removal of colourings and additives from their diet."

The Food Commission, an independent watchdog, says hundreds of children's foods and drinks contain at least one of the additives used in the study.

"Colourings are used to make products look especially appealing to children," said Annie Seeley, a nutritionist with the commission. "Nearly 40 per cent of children's foods and drinks contain additives."

The commission is demanding the additives tested be removed from children's foods and drinks.

Other experts in nutrition say the findings are sketchy. The British Nutrition Foundation says "it is difficult to define hyperactivity in children."

It also stated: "All additives go through rigorous testing in terms of safety."

Written by CBC News Online staff \

* * *

Medicinal Cannabis Clears Crucial Trial

Medicinal cannabis could be available on prescription in Britain as early as next year following the successful completion of key clinical trials.

[Some parents report that marijuana is an effective substitute for drugs like Risperdone for treating autistic children with severe behavioral problems. This report is presented for our readers information only and

should not be taken as medical or legal advice. Thanks to Frank Scheele.]

GW Pharmaceuticals has published preliminary results of four phase three tests, the last stage of drug evaluation before approval, showing the medicine helped relieved symptoms of multiple sclerosis.

Its product, which is sprayed into the mouth rather than smoked, was significantly better than a placebo in reducing nerve damage pain, spasticity and sleep disturbance in the tests involving around 350 patients.

GW - which cultivates some 40,000 cannabis plants a year at a secret location in the English countryside - now plans to seek marketing approval from Britain's Medicines Control Agency early next year.

"The performance of GW's medicine has exceeded our own expectations," executive chairman Geoffrey Guy said.

"Subject to regulatory approval, we are now on track to deliver our first prescription medicine to the UK market next year."

Julie Simmonds, biotechnology analyst at Evolution Beeson Gregory, expects GW's cannabis spray to generate peak sales of around 250 million pounds ($US388.9 million) a year in Europe and Canada, the first markets where approval will be sought.

The British Government has already indicated it is ready to alter the medical schedule of drugs that doctors are allowed to prescribe.

Europe and Canada are expected to follow any green light from Britain within six to nine months, although approval in the United States will be at least two years behind.

GW, which reported a loss of 5.3 million pounds in the six months to March 31, has been holding talks with a number of pharmaceutical firms interested in licensing its cannabis medicines.

But the company, which has enough cash to last it through to 2004, is in no rush to strike a deal.

"They may well wait to sign a collaboration until next year when they've got the complete phase III data and the product has gone into registration, because they could get a better deal then," Ms Simmonds said.

A further five phase three trials are in progress as part of an overall program which is the largest ever undertaken into the medicinal effects of cannabis.

* * *

Interagency Autism Coordinating Committee To Meet Nov. 22

Federal agencies involved with services and research related to autism spectrum disorders hold an Interagency Autism Coordinating Committee (IACC) meeting twice per year. These meetings are open to the public. The next meeting will take place on November 22, 2002, on the NIH campus in Bethesda, Maryland.

* * *

EDUCATION

Some Say Electronic Class Makes Grade

Electronic Classroom of Tomorrow helping a variety of students

1849&rfi=6.]

Maneuvering through crowded halls to get to class on time is a minor inconvenience for most students.

But for Robby Hearn, who suffers from autism and an attention deficit disorder, it was daily torture.

It's one of the main reasons his mother, Sheryl Hearn, investigated a "cyber"

charter school an acquaintance had mentioned. But it sounded almost too good to be true.

The Columbus-based Electronic Classroom of Tomorrow, or eCOT, would supply Robby with a computer and the necessary software and hardware to connect with a network of certified instructors at no cost to the family.

Robby could study at his own leisure out of the Hearns' Painesville Township home without the anxiety of being bumped around in the hallways, the difficulty of taking notes by hand or the taxing efforts to keep up with homework assignments that used to consume his entire night.

"At first I thought it was swampland in Florida," Sheryl said. "I called and found out it was really true."

Three years later, her son, now 14 and a high school freshman, continues to thrive through eCOT. Without the stress of the school environment, he does not need medication anymore to compensate for his attention deficit.

"He loves it," Sheryl Hearn said. "I would actually say he's doing much better now.

"It's just not the torture that regular school was."

ECOT, which serves students across Ohio, is the state's first and largest cyber school.

Founder William Lager created the online learning option in 2000 after his daughter had difficulty in regular schools.

The school now boasts between 3,500 and 4,000 students, from kindergarten through grade 12.

"I don't think three or four years ago when he founded it people thought too much about it," said Jeffrey Forster, eCOT's superintendent. "It just continues to grow and grow. It grows more every day."

There are seven other cyber charter schools in Ohio, and another 30 are soon to open, according to Stephen Ramsey, president of the Ohio Charter School Association.

As of last year, nearly 30 cyber schools were in existence in a dozen states, according to Education Week magazine.

The schools have drawn controversy. Many believe the same brick-and-mortar school rules may not apply in cyberspace.

Critics argue the cyber schools are high-tech versions of home schools that do not deserve public funding.

However, Forster contends that the same stringent standards apply.

Each student is required to check in at least once a week by phone or computer and must participate in certain mandatory chatroom discussions.

Although school is conducted via the computer, Robby interacts in person with a special-needs teacher once a month and joins field trips with other eCOT students.

A field trip where he saw Auburn Career Center's computer technology department particularly caught Robby's interest because he wants to someday design video games.

While Sheryl Hearn believes social interaction is important for her son, she said it was painfully obvious traditional school was overwhelming for him.

"He would always get so ... overloaded, when he got to the next class he couldn't function," she said.

Forster said that the reasons for enrolling in electronic school vary. Some are dissatisfied with public schools.

Other students may be limited by disabilities or the need to work, which sends them in search of a more flexible schedule, he explained.

The program is fully state-funded and follows Ohio curriculum guidelines, making it easy for children to transfer back to regular public school if and when they decide to return.

Forster is a retired high school principal who worked 30 years in public systems before coming to eCOT. He does not see charter schools - especially on-line schools - as a threat to traditional school.

"I think it's growing, but it's not something that's going to threaten public schools," Forster said.

One major issue eCOT and other cyber schools face is security, according to Ramsey.

While most cyber schools provide at least basic software that screens what Web sites and chat rooms their students can access, eCOT built protective barriers for students.

It uses intranet technology that only allows access to eCOT-approved educational sites that work on its system, linked to eCOT's secure servers in Cincinnati.

Online outsiders cannot reach eCOT students through the firewalls eCOT has built into the system, Forster said.

"ECOT is not only Ohio's cyber school pioneer, we have set the standard on cyber school security," Lager said.

The standard is based on federal laws known as the Children's Internet Protection Act and the Child Online Protection Act.

"If you're just on the Internet, you can get anything out there," Forster said.

"With us, you're 100 percent protected."

Part of the concern among traditional education advocates is they do not know how to respond to the relatively new type of learning.

Many people question where the line between electronic schools and home schooling should be drawn.

The Ohio Department of Education declined to sponsor eCOT when it first came into existence because of concerns over how to track how much students were actually "in school," according to J.C. Benton, a spokesman for the state department. The cyber school then turned to the Lucas County Board of Education for sponsorship.

"One of the big issues is, 'When does education begin? - When they get their computer?' " said Benton, who believes eCOT helped pave the way for other cyber schools that followed. "It's a revolutionary arena of education. ... I feel there's lots of issues that we faced with eCOT."

Forster dismisses remaining critics who argue charter schools are undermining the traditional public school system.

"It just offers options for students who don't cope well in a regular school environment," he said. "Shouldn't parents have the choice, and wouldn't parents make the best choice for their children?"

Ramsey, who formerly was assistant director of the ODE's school options office, believes charter schools can often a better environment for children with special needs.

"They all are trying to fit into niches of service," he said, adding that relations between the state department and Ohio's cyber schools have improved.

The choice was the right one for Shirley Kebhart. She turned to eCOT three years ago after watching her daughter, Kristen, endure numerous difficulties adjusting to public middle school.

"She couldn't concentrate on academics. She became extremely unhappy," her mother recalled.

"That's when we decided to give home-schooling a try. It (eCOT) was an absolutely wonderful program, so we just dove right in."

Like Robby, the 15-year-old ninth-grader has since seen her grades rise.

Kristen's sister, Michelle, 13, also has enrolled in eCOT, boosting both her grades and her self-esteem.

The two sisters share time on the computer and spend an average of five to seven hours a day on school work, often delving into more complex research projects than they took on in traditional school.

The ODE requires 920 hours of educational instruction each school year.

Shirley Kebhart is confident in the program, which boasts of more stringent curriculum standards than required by the state.

Neither Kristen nor Michelle have regrets about leaving traditional school, despite the extra work they face in cyber school at home in Leroy Township.

Computer time is tracked by eCOT to make sure students are spending ample time on their subjects, and students take state proficiency tests just like traditional students.

"There's no slacking off," Michelle said. "I go above and beyond what I have to do. I think it's important."

Shedding the anxiety that she carried every day to school has been a huge relief for Kristen, allowing her to focus on improving her grades.

Particularly talented in drawing, she puts art at the top of her list of favorite subjects.

"It's a cool subject," Kristen said. "All of it is cool."

Shirley Kebhart also notes that honesty is a big factor in the eCOT system.

While her daughters can often surf the Internet on their other home computer for shortcuts to their studies, she still steers them toward the collection of reference books shelved along the wall, including "Old Faithful" - the tattered, yellowed dictionary that Shirley insists includes every word her daughters could ever need.

"The old-fashioned values are combined with the new technology," she said.

And as for the isolation many believe comes with home-schooling, Michelle and Kristen find more time to pursue their interests without facing peer pressure.

Their friends, Amber and Heather Bell, of Madison Township - also eCOT students - often work together on research with Kristen and Michelle.

Amber, 16, a junior, and Heather, 14, a freshman, stay active in their church youth group, which more than makes up for the socialization they miss out on from not attending a traditional school.

"It's not like I'm locked in my room and can never leave," Heather said.

However, she also admits public school has several advantages, which is one of the reasons her younger brother still attends.

"Home-schooling's not right for every child. I think it's right for me and it's right for my sister," Heather said.

Shirley Kebhart agrees.

"We made this decision based on what's best for my children and my children only. For us, joining eCOT was a blessing and has done so much for my 15-year-old's self-esteem that I'm thrilled," the mother said. "It shouldn't be a competition. It should be about the kids - what's best for them."

* * *

FORENSIC

The Tragedy of David

Sarah Volp rose early on the morning of June 25, 2001, eager to get to work to train a new employee. The young office manager left her husband and 10-month-old daughter sleeping soundly at 5 a.m. as she steered her Honda Accord west, toward her office in Natomas.

She had given herself an extra 15 minutes to pick up a grande mocha at her favorite coffee shop, a Starbucks in a sprawling retail complex off Interstate 80 at Northgate Road. As she approached the front door, she noticed a young teenager loitering nearby. It was odd, she thought, that a teen of that age would be hanging out alone in the predawn darkness.

At 3:30 that morning, 15-year-old David Maggi had grabbed a serrated steak knife from the kitchen of his group home and quietly walked out the door. As he stood outside the coffee shop, a stabbing scene from a recently televised episode of "America's Most Wanted" played over and over in his head. Autistic and mentally retarded, David had a tenuous grasp on reality.

Shortly after 5:15 a.m., as Volp stepped off the curb with her coffee, David plunged the knife into her back. Stunned and bleeding, Volp ducked back into Starbucks. David retreated to a nearby Wal-Mart and waited for police to arrive so he could get caught, like the bad guys on TV.

No one disputes the details of the attack. What remains an issue 16 months later is whether David intended to kill Volp and whether his parents, the group home and the nonprofit agency that oversaw his care also bear responsibility.

Volp survived, but in the days and weeks that followed the attack the Volps and David's parents focused their anger on the system designed to care for disabled children in California. Lawsuits by both families are pending against two nonprofit agencies entrusted with David's care.

"Obviously, there is some anger toward David. How could there not be?" asked Jeff Volp, Sarah's husband. "But our focus is on how did this happen? Why did it happen? And who let it happen?"

At the time of the attack, David was under the care of Alta California Regional Center, a nonprofit agency that monitors care for about 12,000 disabled adults and children in Sacramento and 10 surrounding counties.

A review of court documents and David's medical and psychiatric records, as well as interviews with family members, paint a picture of an increasingly disturbed young man. David had been on a carousel of treatment regimens and through five psychiatric hospitalizations in the three years since being diagnosed as autistic.

Today, Joan Maggi sits at her dining room table in a condominium near Sunrise Mall, boxes of paperwork piled around her. She has brushed aside her grief; it slows her down. Instead, she is constantly on the phone, with attorneys, doctors, autism groups and anyone else who will listen. If anything can turn around what appears to be a lifelong commitment, she is determined to find it.

"It's still very hard for me to accept that my child hurt another person," she said. "Sometimes, we find ourselves dwelling on the 'should

haves and could haves.' " Joan Maggi knew instinctively something was

amiss with her baby.

As she held her 7-week-old son, he wasn't making eye contact. She remembers telling the baby's pediatrician, but David had no other symptoms and the doctor brushed her concerns aside.

As David grew, he lagged developmentally. His play was marked by tantrums and aggression. And there was the litany of obsessions: the Statue of Liberty; trains; Disney movies; food.

On the playground, other mothers asked, "Is your son autistic?"

Over the years, various doctors offered a variety of diagnoses. Then, when David was 11, a pediatric neurologist confirmed what the Maggis had suspected all along.

They were referred to Alta California Regional Center, which screens clients and contracts with private therapists, who are paid by the state. Alta is one of 21 such centers in California.

At that point, David's behavior did not distinguish him from most of California's 18,460 autistic children, who often can seem lost within themselves.

His caseworker at Alta dispatched a behavioral therapist to teach David and his parents how to rechannel his aggressive reactions. The sessions -- two hours one evening a week -- ended after six months. It was a routine course of therapy for an older autistic child.

David's mother, a pediatric nurse, and his father, a tax accountant, said that when the treatment ended they didn't know to ask for additional help. They said Alta didn't suggest any. The Maggis continued, as they had been, caring for David through private health insurance and negotiating for his educational needs as issues arose.

In school, David, then a fifth-grader, spent half his time in a mainstream classroom with an aide and half in special-education classes.

High-functioning autistic children, like David, long have been a concern of educators in the San Juan Unified School District where David attended school, according to Marilyn Moore, who oversees autism programs for the district.

"You have a child who learns quickly, but is having trouble with high anxiety," she said. "Socially, he doesn't fit in."

Technically, David qualified for two highly specialized programs: one for autistic children, the other for those who are mentally retarded. But David's parents said they were told his IQ was high enough and his autism mild enough that he likely would be better off in a less restrictive setting.

"He'll be bored there," Joan Maggi said teachers told her.

+Article continues:

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

_______________________________________________________

* * *

Reader's Posts

Looking for information on the use of Hyperbaric Oxygen Therapy for children with Autism. Has anyone heard of it's use? Have there been any trials? Any news/info - Pro or Con? arcinformation@charter.net

******

Does anyone have information on sources of funding or grants for families with Autistic children? My daughter would highly benefit from some equipment that we cannot afford (asst. technology, sensory equipment, etc.) Kathy at jhud2@earthlink.net

******

******

I would like to know if anyone has seen results using Carnosine. Did you see any changes either positive or negative? Carol Ann caharrell@worldnet.att.net

*******Looking for consultant with experience running a DTT, VB, Fluency program on the central coast of California. Need someone with a heavy DTT background but willing to incorporate other methodologies. Work with our 7yr. old son on a monthly basis. NPA necessary. derosa@earthlink.net

******

Looking for consultant with experience running a DTT, VB, Fluency program on the central coast of California. Need someone with a heavy DTT background but willing to incorporate other methodologies. Work with our 7yr. old son on a monthly basis. NPA necessary. derosa@earthlink.net

*******

****** [

ABA therapist required to work with our delightful 3.5yr old daughter in EXTON PA paolo.berbotto@verizon.net Apply on-line or fax resume to (805)968-4815.

******

>> FREE (Almost) READERS' POSTS <<

For Individuals, organizations, non-commercial and

commercial. Limit your posting to no more than 60

words please. There is no charge for this service,

but posters are obligated to thank all those who take

the time to answer your ads. This is a consideration

for others with autism after you and yours, who seek

assistance from appreciated readers. Send submissions to:

_______________________________________________________

SAR Autism Resources

* The Autism Calendar: Subscribe

To List an event in Calendar:

* The Schafer Autism Report: Subscribe

Subscription type: Schafer Autism Report

* Free Readers' Posts

* News Archive – Autism Database

_________________________________________________________________

Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie

CALENDAR EVENTS@doitnow.com Michelle Guppy Ron Sleith

++ To Unsubscribe, Send an email to unsubscribe@doitnow.com ++