SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Thurs, Fri Nov 13 & 14, 2003 DOUBLE ISSUE Vol. 7 No. 228, 229

RESEARCH

* Epigenetics May Have Many Roles

* Technique May Identify Novel Disease Genes at a Faster Clip

ADVOCACY

* Eli Lilly and Thimerosal

CARE

* NY Investigating Allegations Against Queens Autism Group

EDUCATION

* Senate Bill Revisions Push For Autism Training, Early Intervention

AWARENESS

* The Child Within Autism

SPORTS

* Special Athlete: Autism Doesn't Stop Phillips

LETTERS

* Fear of Litigation

* Mercury? Don’t Worry, Be Happy

* A Note on the Increasing Autism Data

* Depressing News

* Little Chair – Long Table

* Test Your Children for Food Allergies

* SCD Diet and Protein Digestion

* People Mistrust MMR Because They Mistrust Politicians

* SAR Makes it Easier

RESEARCH

Epigenetics May Have Many Roles

nlivepievidence.16a82. <- - address ends here. (Subscription required.)

While the human DNA code is at the root of all body processes, scientists are starting to appreciate that the code is coated with extra biological instructions. Although studies involving this extra layer of information are in their infancy, there are tantalizing hints that this emerging science of epigenetics may reach into many aspects of human life and disease.

Some scientists believe that nutrition, cancer, in vitro fertilization – even autism – may be among the arenas where epigenetics plays a role.

Reported incidence rates have been rising for autism, a neurological disorder that impairs communication and other social skills. Researchers do not know the reason for the rise, but because autism runs in families, scientists have concluded that genes play a role in the disease.

But genetics may not tell the whole story.

Researchers at the Baylor College of Medicine in Houston and their colleagues are proposing that epigenetic information -chemical changes layered on top of the genetic code -may also be a factor.

The epigenetic idea centers on chemical flags, called methyl groups, which cells attach to their DNA. These flags signal cells to activate or silence genes.

Folic acid, a supplement found in prenatal vitamins and added to flour, bread and other grain products, aids in adding these methyl groups to DNA.

Folic acid supplements decrease the risk for neural tube defects in developing babies. A report scheduled for presentation this week at the annual meeting of the American Society of Human Genetics proposes that too much folic acid in a pregnant woman's diet may increase the risk for autism. The scientists, led by Baylor geneticist Dr. Arthur Beaudet, have proposed that in autism, a gene on human chromosome 15 may not acquire the appropriate pattern of methyl group flags.

This gene has been previously linked to Angelman syndrome, a condition marked by mental retardation, certain traits of autism and other symptoms.

Other researchers stress that the Houston team's idea is only a hypothesis.

"I think it's a very interesting idea," said James Sutcliffe, a human geneticist at Vanderbilt University in Nashville.

But, he noted, "it's an intellectual construct right now for which there's really not much proof."

Dr. Sutcliffe said he favors the idea that autism occurs when someone inherits a set of genes that, together, increases the risk for the condition.

Nonetheless, other research has hinted at a link between autism and epigenetic problems, he said.

For instance, about 2 percent of children with autism inherit an extra copy of a particular stretch of DNA from their mother. This stretch is saddled with epigenetic information that influences how cells read the DNA.

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* * *

Technique May Identify Novel Disease Genes at a Faster Clip

November 14, 2003— Researchers have used ultraviolet light to "weld" a key regulatory protein to its RNA targets, creating a new tool that can be used to identify novel proteins involved in a variety of human diseases.

Using this technique, the researchers have identified an array of RNA molecules regulated by the RNA-binding protein, Nova, which has been implicated in an autoimmune neurodegenerative disease. The researchers believe their technique may help in finding the RNA targets of other proteins involved in neurological diseases, including the most prevalent form of mental retardation, the Fragile X syndrome.

Robert B. Darnell, a Howard Hughes Medical Institute investigator at The Rockefeller University, led the research team that reported its findings in the November 14, 2003, issue of the journal Science.

Darnell and his colleagues have been investigating the function of Nova, an RNA-binding protein that regulates alternative splicing. In alternative splicing, messenger RNA, carrying the blueprint for a protein from the cell's genes, is processed in such a way that it can produce a number of slightly different proteins. Apart from its role in alternative splicing, the Nova protein is of great interest, said Darnell, because it is targeted by the immune system in the neurodegenerative disease, paraneoplastic opsoclonus myoclonus ataxia, which causes progressive loss of motor control.

"Previous work in our laboratory had revealed how Nova bound to RNA, and we had identified a couple of specific target RNAs in the brain," said Darnell. "These studies led us to discover that Nova was the first mammalian splicing factor that was restricted to a particular tissue. We then really wanted to know what is the full array of RNAs that Nova binds to and regulates in the brain?"

According to Darnell, Nova is just one of a rapidly growing list of RNA-binding proteins that are being implicated in human diseases. Thus, a technique that can help identify the multiple RNA targets regulated by an RNA-binding protein could potentially aid in understanding the cause of many human diseases.

To facilitate identification of the target proteins, the scientists adapted a technique that had been used in the test tube to identify the targets of RNA-binding proteins. This technique involved irradiating molecules with ultraviolet light, which caused a cross-linking reaction that chemically bonded the protein with its RNA target. The bond is so tight that the molecules could be isolated and identified together.

Darnell and his colleagues made some enhancements that resulted in the development of their "cross-linking and immunoprecipitation" (CLIP) technique. The researchers began by irradiating intact mouse brains with UV light, seeking to weld together RNA-binding proteins and their RNA targets in living tissue. Following a technically demanding purification and analytical procedure, the researchers were able to pinpoint some 340 Nova CLIP "tags" — telltale pieces of Nova-bound RNA that identified the RNA target molecule and revealed where the Nova protein bound to it. The researchers verified that the tags represented functional Nova RNA targets by comparing their splicing in wild-type mice with knockout mice lacking Nova.

The striking splicing changes in the knockout mice, said Darnell, constituted proof that Nova is the central regulator of splicing in a whole set of RNA molecules found in the brain. "We're finding that Nova is an extremely important factor—maybe the factor—that is responsible for neuronal splicing for some targets," he said.

Their studies turned up another important observation: Nova does not act randomly. "Looking at these targets as a group, they have a tremendous biological coherence to them," said Darnell. "Almost seventy percent of them are RNAs that have something to do with the neuronal synapse." Synapses are the junctions between neurons. One third of the Nova synaptic RNA targets encode proteins involved in inhibiting neuronal function. Regulating neuronal inhibition plays a key role in the balance controlling nervous system function normally as well as in neurologic disorders such as epilepsy, said Darnell.

"These findings suggest that Nova has evolved to regulate a set of RNAs that have a coordinate function," he said. "So, if you turn Nova function up or down, you'll coordinately regulate a group of RNAs en masse."

The success of the CLIP method in identifying Nova targets, said Darnell, suggests that it will find broad use in discovering targets of other RNA-binding proteins, including those involved in such diseases as Fragile X mental retardation. "The study of the fragile-X-syndrome protein has been stuck, because knowing it's an RNA-binding protein doesn't really tell you what it's doing," said Darnell. "The problem has been to identify the set of RNAs that it regulates. We and others have made some progress using other techniques, but CLIP should help solve this problem."

CLIP has also revealed that Nova may play a previously unsuspected role besides regulating alternate splicing. "We found quite a few instances of CLIP tags that are not near alternative splice sites, but are at the beginning or end of an RNA," said Darnell. "This suggests that there may be some brand new biology going on that we didn't suspect." This new form of regulation might be occurring as RNA's information is being translated into a protein by the cell's protein-making machinery, Darnell said.

* * *

ADVOCACY

Eli Lilly and Thimerosal

Thimerosal is an organic compound that is 49.6 percent ethylmercury. Eli Lilly and Co., the Indianapolis-based drug giant, developed and registered thimerosal under its trade name Merthiolate in 1929 and began marketing it as an antibacterial, antifungal product. It became the most widely used preservative in vaccines. Thimerosal cannot be used with live-cell vaccines, such as MMR (measles, mumps, rubella) or polio, because it would kill the vaccine. The only research looking into the safety of thimerosal was done in 1930 by Eli Lilly-sponsored doctors, who injected it into 22 patients with meningitis. The human experiments failed to prove that thimerosal was nontoxic. Nonetheless, researchers H.M. Powell and W.A. Jamieson published a study in September 1931 in the American Journal of Hygiene that stated thimerosal had a "low order of toxicity" for humans, without mentioning that the human subjects were ill and subsequently died. Internal Lilly documents from the time, however, revealed that the company’s researchers were worried about Merthiolate’s "burning qualities" when used on the skin. By 1935, Eli Lilly’s Jameison had further evidence of thimerosal’s toxicity when he received a letter from a researcher who had injected it into dogs and saw severe local reactions, leading him to state: "Merthiolate is unsatisfactory as a preservative for serum intended for use on dogs."

In the 70 years since thimerosal/Merthiolate was developed, the FDA never required Eli Lilly to conduct clinical studies of its safety, despite ample evidence of its toxicity and its highly allergic properties. In fact, the FDA today still refers to the 1931 Powell and Jameison study on its Web site as indication of the "safety and effectiveness" of thimerosal as a preservative. Thimerosal/Merthiolate was widely used in over-the-counter products, including ointments, eye drops, nasal sprays and contact lens solution. In 1998, the FDA finally banned Thimerosal for use in OTC products—18 years after it began a safety review of mercury-containing products. It took another year before the CDC and the FDA would ask manufacturers to remove thimerosal from childhood vaccines. Eli Lilly stopped making Merthiolate-containing products in the mid-’80s but still profits from licensing agreements with pharmaceutical companies around the world.

Eli Lilly faces hundreds of civil lawsuits from parents who blame thimerosal for their autistic children. But the pharmaceutical giant has powerful friends in the White House and in Congress. The elder George Bush sat on Lilly’s board of directors in the 1970s, and White House Budget Director Mitch Daniels was a Lilly executive. Lilly CEO Sidney Taurel was named by President George W. Bush to the Homeland Security Advisory Council. In November 2002, Congress passed a provision, tucked into a spending measure for homeland security, to indemnify Eli Lilly from lawsuits and require families to seek compensation through the federally funded Vaccine Injury Compensation Program. It was repealed in February 2003 after public outcry. Senate Majority Leader Bill Frist (R-Tenn.) still hopes to pass a similar bill. Congressional consideration for Eli Lilly makes sense: In the 2002 election cycle, the company gave more than $1.5 million to federal candidates, with three quarters to Republicans, making it the fourth-biggest giver in the pharmaceutical industry, according to the Center for Responsive Politics. In the current election cycle, the company already has given close to $230,000 (67 percent to Republicans) to federal candidates.

Eli Lilly may be determined to avoid liability for thimerosal, but that doesn’t mean it has abandoned children with neurological problems. This year, the FDA approved Straterra, a new Eli Lilly drug for the treatment of Attention Deficit Hyperactivity Disorder. The irony that Eli Lilly profits from damaged children is not lost on parent Robert Krakow: "When Eli Lilly is promoting Straterra on TV, saying up to 10 percent of children can be helped, you realize what we are up against."

Annette Fuentes is a New York-based journalist who writes frequently on health and social policy issues. A contributing editor of In These Times, she is co-author with Barbara Ehrenreich of Women in the Global Factory.

* * *

CARE

NY Investigating Allegations Against Queens Autism Group

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Responding to a request from a local lawmaker, the state has opened an investigation into the quality of care given by a Queens non-profit health organization.

The Office of Mental Retardation and Developmental Disabilities confirmed this week that it is checking into allegations against Quality Services for the Autism Community.

The group, which is based in Astoria and has offices in Hollis and Whitestone, is the only community-based organization in the borough that exclusively serves individuals with autism and pervasive developmental disorder.

OMRDD spokeswoman Deborah Rausch would not offer specifics about the investigation, which will take at least two weeks to complete. "We are looking into it right now, and we will be looking at this very seriously," she said.

The investigation was prompted by an October 23rd letter from State Senator Malcolm Smith (D-St. Albans) to OMRDD Commissioner Thomas Maul.

In the letter, Smith noted that staffers from QSAC and two labor unions held a briefing with elected officials on October 9th to discuss concerns at the agency. Aides to Assemblyman Jose Peralta (D-Jackson Heights), State Senator Ada Smith (D-Jamaica) and Councilman Tony Avella

(D-Whitestone) were also present.

A videotape, plus personal testimony from current and former QSAC employees and parents of children in the program, uncovered "disturbing" problems, such as improper care and a lack of bathing of clients, Smith said.

"I deeply fear and regret that in this case, we as a society have dropped the ball," the senator wrote. "It is incumbent upon a civilized society to look into the allegations and take immediate action."

QSAC executive director Gary Maffei did not respond to an interview request. Spokesman Perry Brown declined to comment.

Controversy is no stranger to the group, which was founded in 1987, and offers case management, after-school programs, a day school and respite services to the autistic individuals and their families.

Earlier this year, labor advocates charged that QSAC executives harassed and intimidated workers who wanted to form a union. The Civil Services Employees Association Local 100 filed a complaint, which prompted state Attorney General Eliot Spitzer to look at the case. Union members also protested the organization last April during a Mets’ autism day celebration at Shea Stadium.

QSAC dismissed the allegations as a "campaign of harassment and intimidation" to unionize a workforce that was largely against the effort.

Smith said in an interview last week that he was initially skeptical of the fresh allegations against QSAC—until evidence suggested they were valid.

"I was apprehensive, because I thought they were trying to unionize by villainizing (management)," he added. "But when you hear the staff members and parents, and all of a sudden this video comes out, the evidence was a little overwhelming."

©Queens Chronicle-Eastern/SouthEastern Edition 2003

* * *

EDUCATION

Senate Bill Revisions Push For Autism Training, Early Intervention

[By LRP Publications.]

The revised Senate bill for special education released this week calls for more teacher training in autism spectrum disorders and puts more emphasis on early intervention and services. These changes are part of the Senate's Health, Education, Labor and Pensions Committee proposal to reauthorize the Individuals with Disabilities Education Act. Leaders have spent the past six months putting the finishing touches on their plan, and while the members have made a significant change in further defining who are highly qualified special educators, most of the revisions were minor and unlikely to gather opposition.

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AWARENESS

The Child Within Autism

The cause remains unknown, but with more cases diagnosed, parents can only cope

St. Patrick's Cathedral was particularly quiet and solemn just after the consecration at a recent Sunday morning Mass when Scott Gammage became aware that his 11-year-old son, Nicolas, was growing restless.

"I decided it was time to go, and we were slipping out the back when Nicolas suddenly turned around, waved real big and shouted, very clearly, "Bye, God! See you tomorrow!"

The outburst surprised parishioners, and some chuckled, but Gammage says most of them were probably wondering why a child as old as Nicolas was not better behaved in church.

Gammage no longer asks why.

He and his wife, Alison Blass, have been dealing with unusual outbursts from their son ever since Nicolas finally started talking a little, when he was almost 5 years old -- two years after autism was diagnosed.

Autism is a neurologically based developmental disorder that affects verbal, social, emotional and motor skills. It is a spectrum disorder, meaning that there are various levels of impairment. Some children with autism seldom or never speak. Most seem focused inward, unaware of their surroundings. Some have seizures and/or tantrums. They may be aggressive and destroy property or injure themselves. Often they repetitively rock their bodies back and forth or flap their arms or rake their knuckles across their foreheads.

Nicolas "doesn't do conversation," his father says, but he often responds to direct questions with appropriate one- or two-word answers. He has calluses on his knuckles from raking them across his forehead. On a recent visit, he was sulky and angry because he wanted to go to the store and buy a balloon. But then he volunteered an angelic smile and a stiff-armed hug when this reporter was leaving.

"We always knew Nicolas would be developmentally delayed because he was a preemie, but we were not prepared for him to start running around the house, knocking things over and tearing the blinds off, like a little tornado, before he could put two words together," Gammage says. "Our first concern was how to keep him from destroying the house and hurting himself."

Nicolas suffered a stroke before he was born, when he weighed just 2 pounds, 5 ounces. He underwent brain surgery when he was six days old and spent the first three months of life in a neonatal intensive care unit.

Still, no one knows what caused autism.

"For me it's more about what to do, not why. What needs to happen for him?" says Gammage, president of the Autism Society of Greater Tarrant County, which has about 800 families on its mailing list.

Debate over the cause or causes of autism has heated up in recent months with a growing awareness that the incidence rate is increasing.

Estimates of the prevalency rate for autism range from 1 in 1,000 to 1 in 250 live births, according to the 2003 report to Congress from the Interagency Autism Coordinating Committee, which oversees autism research funded by the National Institutes of Health.

"Recently there have been reports of increases in the numbers of children receiving a diagnosis of autism or receiving public services for autism," the report states. "Data from California shows that autism has increased substantially among children in that state, from 44 cases per 100,000 in 1980 to 208 cases per 100,000 in 1994."

Experts agree that one or more genes are likely involved, along with some environmental factor such as a virus, toxin or trauma at or near birth.

Many parents blame thimerosal, the mercury-based preservative used in some vaccines, but "current scientific evidence does not support the hypothesis that measles-mumps-rubella (MMR) vaccine or any combination of vaccines causes the development of any type of autism," says information from the Autism Information Center, maintained by the CDC.

Possible links have been extensively reviewed in numerous studies, including, most recently, a study that involved all 537,303 children born in Denmark from January 1991 through December 1998.

That data, published in the September 2003 issue of Pediatrics, concluded there was no association between the age at time of vaccination, the amount of time that had passed since vaccination or the date of vaccination and the development of any autistic disorder. A study of more than 140,000 children in the United States published in the December issue of the same journal also found little evidence to support a link.

"The data is just not there to support any connection between immunizations and the risk of autism," says Dr. Joyce Mauk, medical director of the Fort Worth Child Study Center, where about one-fourth of the 5,000 children seen each year have autism, often in conjunction with other disabilities such as Down syndrome or hyperactivity disorder.

Mauk attributes a big part of the increase to changes in diagnostic methods and improved identification of children with autism but says there is probably a real increase in numbers as well, and no one knows why.

* * *

SPORTS

Special Athlete: Autism Doesn't Stop Phillips

/1026/SPORTS

He practices all week and has competition on Sunday. He trains every day and races on Saturday. School is every weekday. But an off day is never his.

There is very little down time for 12-year-old Robbie Phillips.

The Fort King Middle School student is a runner and a gymnast. And he is autistic.

Phillips was stricken with autism at birth. His father, Bob Phillips, remembers his son at age five when he couldn't even dress himself or tie his shoes without help. Now, seven years later, Robbie has mastered the basics, and so much more.

Athletics have been an essential part of Robbie's life.

"Our feeling is we want to build on strength, and not just build on weaknesses," Bob Phillips said.

Robbie began physical therapy in 1998 at Philadelphia's Institute for the Achievement of Human Potential (IAHP).

"The therapy is designed for neurological improvement, mainly addressing areas of mobility" Bob said.

After completing work at the IAHP, Robbie moved to running.

In his first race, the Marion county P.E. Association Fun Run in 1998, Robbie finished ahead of four "well" peers. That race was a catalyst of sorts as Robbie competed in four more races before the year's end. Robbie has since competed in some 41 races.

"It's a social thing as well as an athletic thing," Bob added about running.

A social thing for Robbie is a family thing for the Phillipses. Bob runs with his son in some races while sisters Kelly, 13, and Patsy, 11, and mother Cathy sometimes encourage from the side.

They help on the sideline and in the kitchen. Robbie is on a wheat/gluten-free diet.

"The whole family helps out on that," said Bob.

In 1999 Robbie was awarded a 200 Miler Club patch from the IAHP for running 200 miles within a 60-day period. Currently his personal records are 39:55 in the 5K and 24:09 in the 3K.

With his coordination still needing improvement, Robbie moved on to gymnastics. Communication was key with the two. Headphones allow Robbie to block out outside noise and focus on his fathers' manual instructions. A thumbs up to get a particular apparatus, a thumbs down to come down. A handclap or a hug for a good job. Devoid of conversation, action is key. After a triumph father and son alike, share a smile.

Robbie's verbal skills are minimal. Obstacles had to be overcome. Robbie wears headphones while working out at Balcony Gymnastics Cheerleading & Fitness. Bob has been coaching his son at the studio for 2 years. Balcony allows the Phillipses to train free of charge.

Robbie competes in all six routines - horizontal bar, floor exercise, still rings, vault, pommel horse and parallel bars - some events were completed in a matter of days, others took painstakingly longer. The independent pullover took some 18 months.

"That's (independent pullover) a harder skill, but we just took it step-by-step," Bob said.

Same with the cartwheel, which took close to four months. That's at 50 a day, along with other events. Robbie trains at Balcony Monday through Thursday and Saturday for two hours each.

In 2001 and 2002 he won the Special Olympics all-around titles, winning 14 gold medals.

On Oct. 26, Robbie qualified for the state gymnastics competitions Dec. 6 in Bradenton.

Robbie is proud of his accomplishments. Bob can see it in his son.

Like any parent he has goals for his child. No wish list here though. Visions of a physician or accountant are put away as Bob just wants Robbie to have a relatively normal life.

"When he was a youngster he couldn't eat with a knife and fork, he couldn't run, he had no eye contact," Bob said.

Now he's winning gold medals, competing in 5K events and even triathlons.

Robbie's recent happenings: Oct. 26 - 1st in flour exercise, rings, vault and high bar.

Oct. 3 - 43.3 for six of his gymnastics routines.

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* * *

LETTERS

Fear of Litigation

I think those who spoke out against the trend to litigate do have a valid point. Having a typical child who attended a year of private school and the current year in public school, I see a world of difference. The most disturbing aspect is the fear. It seems regular education has a fear of doing anything against the norm, because it might not be spelled out as "county school guidelines". The private Christian school she attended was happy to work "outside the box" if it helped my daughter gain a new skill. Her public school teaches one way, the only way, and if you can't get it you must have an inability to learn the concept.

Were the public school establishment doing what they should have been doing all along, I wouldn't have to sit through long meetings and receive enough paperwork to restock the timber burned in recent California fires. Were the school establishment proponents doing their jobs, we wouldn't have to litigate every failure by them to provide our kids a chance at an educated life. I could call the school, tell them I have an autistic child, meet with the principal with a list of her issues, and have the principal pick a good teacher to work with her. We could chat over how we handle various issues and we could all get to work.

This is a common sense approach to education. However, we aren't getting this. We could argue all day about lawsuits as the problem, but I for one am very thankful for all those parents before me who have fought, inside and outside court, for my daughter to get what she's getting. Should the need arise, I will do the same for my daughter and for those mothers and fathers and siblings who have yet to realize their walk in the autism world.

I'm looking into returning my NT daughter to private school next fall, as well as my ASD daughter to attend private when she's school-aged. I won't be suing for 30 minutes of speech. I hopefully will be doing as little as possible with the public school system and regular education. Regular education seems to care too little about educating.

- Debi Haney Knoxville, TN

* *

Pertussis Vaccinations

Once again, words like "misinformed" and "yuppie" are thrown around loosely in response to the efforts of intelligent, well-educated, and

(increasingly) well-informed parents. This article appeared just on the

For example, witness Dr. Gary Freed, MD, U-M Chief of Pediatrics, claim that thimerosal had been removed from all vaccines in the U.S., but when questioned further by Mr. Wilson, his response was that it's current policy to give parents the choice between mercury-free or mercury-containing vaccines. So which is it - do you get to choose, or does thimerosal no longer exist? Apparently the answer depends on how much you already know as a patient or parent. Dr. David Johnson (Deputy Director Michigan Department of Community Health), who was adamant that there is no credible evidence to support a link between autism (or other neurological disorders) and mercury poisoning from thimerosal, casually laughed about "competing interests" being the reason he had not even reviewed any of the studies (Dr. Geier and others). And a registered nurse at one health care facility (not identified, but referred to as "one of the best medical facilities in

America") assured the report's producer (over the phone) that thimerosal would not be present in any shots - did he/she not know any better, or was

this RN also just a bit misinformed, and then just passing it on? And how

did Dr. Benjamin Schwartz (Center for Disease Control) sum it all up? "We all feel comfortable that the benefits of the vaccination program far outweigh any potential risks". Do "we all" - including all the "misinformed yuppies" along with a growing number of physicians and researchers - really feel that way?

True - misinformation resides on the Internet. It can also sometimes be found in media reports. But it also lives in the widely publicized conclusions that industry and government so quickly extract from a select group of flawed studies (where apparent conflicts of interest apparently abound). It's also in the rhetoric of government officials who scare us into thinking that we need to let the vaccine manufacturers be totally shielded from all accountability, or they'll just "take their ball and go home". It's in the resounding words of trusted public health officials who reassure us that all is well, when they have not even educated themselves on both sides of the issue. And it's in the subtle undertone of articles like Ms. Elias' that portray unvaccinated kids as a threat to the rest of society.

As more truths about vaccine policy begin to surface, I don't think you have to subscribe to any conspiracy theory, or be a "misinformed yuppie", to be seriously questioning the status quo. And people like Dr. Geier, Dr. Bradstreet, Dr. Haley, Lyn Redwood, and so many other WELL-INFORMED parents and researchers are anything but a danger to the rest of society (I don't know if they would consider themselves a bunch of yuppies, and it's certainly not at all relevant in any case). They know that vaccines prevent disease and save lives - they just also happen to know - often through their own personal tragedies - that dirty vaccines can destroy children. They don't want to stop vaccinations, but at the same time they don't want to see your child or any other child end up with vaccine-strain measles virus in their brain, or massive amounts of mercury in their bodies, or a lifetime of suffering that might have been easily avoided. They don't want to see any more families destroyed. What they are trying to accomplish benefits all our kids, but it also has a lot of people running scared. And it's that fear which fuels the real propaganda machine.

I don't know with certainty if a vaccination played a part in my son's autism, but after following this issue for so many months, I am certainly not convinced that all vaccines are safe, or that a "one-size-fits-all" global policy for vaccinating our children is appropriate. And I do base my opinion to a large extent on misinformation - that which is constantly flowing from doctors who spread their message of doom-and-gloom (pitting parent against parent to divide and conquer?), public health officials who have personally spent less time researching this issue than many of the "misinformed" parents out there, and of course the vaccine industry itself, as they all (try not to) properly address the growing body of evidence.

- R. Toni Ontario, Canada

* *

Mercury? Don’t Worry, Be Happy

Ok, I admit being confused. In "The Toxicology of Mercury _ Current Exposures and Clinical Manifestations" in The Schafer Report (10-31-03), the claim is made that attempts to remove exposure to mercury from three specific sources (amalgams, fish and vaccines) may pose greater health risks than allowing the exposure. What kind of logic is this?

That mercury is neurotoxic is well established. If they are suggesting that using safer materials to fill teeth, reducing the intake of tainted foods or eliminating thimerosal as a preservative will somehow cause people to be less healthy, I would sure like to see their evidence! Following that same logic we should all continue smoking, cease working on safer medicines and forget about reducing toxic emissions to the environment. Like the song says, "Don't worry, be happy."

- Charles Whiting, Wheeling, WV

* *

A Note on the Increasing Autism Data

It is important to add a note in response the SAR editor's comments regarding the data on the increase in the number of children who qualified for special education services in 1992-1993 and 2002-2003 under the category of "autism". ["The writer presented no evidence that such a profound increase in labeling [0f autism], 870%, is the result of misdiagnosis (or lack of diagnosis) in the 1990's."] As I'm sure you are aware, 1992 was the first year that the category of autism was used under IDEA, and that prior to this time (from 1975 to 1992) students with autism were otherwise provided with services under one of the other categories, such as "severally emotionally disturbed" and "multiple handicapped".

Therefore, it is likely that one of the many reasons for this statistical increase in the number of students receiving special education services and coded with this category is that these students were re-classified and/or correctly classified during the year 1992 and the subsequent years between 1992 and 2002. Please note that I am not disputing that there are other reasons for this increase, only suggesting that a more careful review and analysis of the data would likely reveal that the re-classification into the category of autism, as well as the initial classification into the new category of autism (instead of another category) accounts for a portion (some? most?) of the statistical increase.

- Linda Carter-Ferrier, Severn, Maryland

* *

Depressing News

The SAR outdid itself today [District Sues To Keep Autistic Girl Out Of California Classroom, Nov. 10.] But the newsletter left me feeling very depressed.

It would be nice to see some good stuff about autism every now and then. Tall order I suppose.

- Sissi Garvey, NY

Editor’s response: In the report just the day before, we published 15 autism research abstracts and two relevant research articles. Progress is happening in autism research. I think that's pretty good news, don't you?

Also, keep in mind that the SAR is mostly a news clipping service. If there is much bad news that day in the media and on the net, then it will be reflected in the newsletter. "Don't shoot the messenger. . ."

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I was disturbed by article because it so much resembled what happened to my son here in Michigan last year. My son was a happy, high-functioning second grader in a regular classroom. By the third semester of third grade, he was an angry, unpredictable ball of frustrations that exploded when he threatened to shoot his teacher and I was called into school for an expulsion hearing. At first, the school baldly accused me of providing a "severely dysfunctional" home life for him, insisted that he had been watching "inappropriate television," and that my whole family needed "emergency psychological intervention." I was stunned, to say the least.

As the facts emerged, however, his home life turns out to be as excellent as any for a boy with autism, the only "inappropriate television" he routinely watches is "Blue's Clues" and "Dora the Explorer" (because his peers have long outgrown them), and what needed "emergency intervention" was his IEP.

Third grade presents a huge leap in academic challenges for all children. In earlier grades, all kids are routinely given regular prompts and excessive praise to guide them into early reading and math skills. Third grade is the first year (here in Michigan, anyway) where work is expected to be done independently, when stories "show, but don't tell," that is, they require the reader to draw conclusions and make inferences, and students are expected to organize and prioritize their own work. These demands, without any support, proved to be too much for my son. His classroom teacher (who liked to preface many of her comments to me with: "I've been teaching third grade for twenty six years, and. . . .") did not understand my son's challenges and treated him like any other student. She tried to get him to complete unfinished assignments during the noisy classroom break, when all the other children were chatting and snacking and moving about. She was completely unaware of why he could not continue to work during break. She would insist he not fidget, demand that he sit through ear-piercing school assemblies, and be mystified when he finally acted out in desperation.

This year (fourth grade) he has three sensory breaks built into his day. He has a rocking chair at his desk and a weighted vest when he chooses to wear it. The sensory breaks are taken in a special "sensory room" that has a swing, a rice table, a mini-trampoline, toys, therapy ball, and many other activities. It's not a huge space; it's a converted storage room. But this has made all the difference in my son's day. He is happy and smiling again. He no longer runs away from the bus stop. He is chatting with peers and raising his hand in class. Last week his report card had one "A" (spelling), two B's, two C's, and one D+ (reading comprehension--we still haven't mastered that drawing conclusions/making inferences thing). We also put him part time in the special ed. room for extra help with math, gave him extra time to complete assignments, and gave him simple aids for keeping his place while working, i.e., a large index card with a window in it to show one equation at a time, etc.

I hope you will pass our experiences on to the Samaris. Perhaps it will help their daughter.

- Cindy Alspach, Michigan

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Where we live in Texas, Child Protective Services can get involved if there is an "observable and measurable" negative change due to possible abuse and neglect in the classroom. If the Samaris feel that their daughter's behavior has regressed due to classroom maltreatment, they may be able to contact CPS about the situation.

- Amy Connor

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If ever there was an example of parents not working with the system, this must be it. As the single parent of one daughter with Aspergers, and twins with Autism (one that was extremely violent), it angers me that the parents would use their child as a pawn. Sometimes it is not appropriate for our kids to be mainstreamed until they are ready. What parents want is not always the best for our children.

- Rachel Salomon-Sadowitz, Chattanooga, TN

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Little Chair – Long Table

Weary from yet another battle over "eligibility criteria" for my son...reading the information you sent reminds me that I am not alone in this IEP war. Thank you.

- Rose Vasquez

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The best advocate "mom" can have at IEP meetings "is" usually "dad" (if you are so fortunate to have such a partner in life...). Also, what these "officials" are telling or misrepresenting to us about the legality of parent advocates is merely/sickeningly opinions of the law and should be treated as such. Perhaps more accurately would be to say that these lies, of liars are "masquerading" as opinions. We should not back down from following through with our truth.

- Mike Glavic, Niagara Falls, Canada

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Test Your Children for Food Allergies

[Parts of this letter appeared before in the SAR, but was garbled due to editing and formatting errors.]

Like Jana Marshall, we first put our son on the CF/GF diet shortly after his diagnosis. He was approaching his third birthday and regressing rapidly. At his worst point, he measured on the "severe" side of "moderate" on the A.R.I.'s sliding scale. It was terrifying, as parents, to watch our beautiful son slipping away from us. After a couple of months on "The Diet" with little improvement, we received his IgG test results and found he was not only allergic to Casein and Gluten, but also to so much more! We immediately removed the offending soy, peanuts, eggs and citrus, etc, from his diet, and began working up to the appropriate levels of multi-vitamin with B6 and magnesium, plus Vitamin C, Zinc, Reduced Glutathione and DMG. Within two days he had the first solid BMs of his life, and within a few weeks he began to speak.

I can't begin to tell you the difference "The Diet" and nutritional supplementation have made in my son's life. He turned five last month and is now mainstreamed into a "typical" kindergarten class. While OT and Speech therapy remain on his weekly schedule, his teachers maintain they would not know he had special needs if we had not told them. He carries all snacks and meals and is seldom seen without his lunch bag - He tells anyone who will listen that "wheat and dairy make me sick." A few months ago we tried an egg "challenge," and re-introduced them into his diet for several weeks before the cumulative strain began to show. Perhaps someday my son will be able to eat in restaurants, and I won't be mail-ordering bread and packing every morsel that goes into his mouth each day. But you know what? If he NEVER tolerates additional foods I really don't care! It's only food.

I am deeply saddened in knowing that not everyone will experience such impressive results, but I join Jana Marshall in urging parents to persevere in testing for additional allergies/issues. The medical community tends to look for "single causality", but we have seen first-hand that there are often multiple forces at work in the precious minds and bodies of our children.

- Robin C. Bedingfield-Brown Hillsborough, N.C.

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SCD Diet and Protein Digestion

The Mom who is hailing the SCD diet is wrong in one of her points, re; she states 'the children's problems are not due to not digesting protein, but carbohydrates,' (paraphrased). There is a very large group of kids, such as my grandson, whose chief problem IS digesting protein; they often present a Maple Syrup-Burnt sugar odor in their urine, sweat, and earwax. . . .Perhaps on a regular basis, perhaps on an intermittent basis. In our case, the grandson, who presented the maple-burnt sugar odor intermittently, has had the extended DNA blood test looking for in born metabolic disorders -(New-Gen Screening, extension of tests given to newborns in most states, done on Any age), in particular, Maple Syrup Urine Disease, and many urine evaluations looking for the particular metabolites of MSUD, that have found Nothing- (at Riley Children's Hospital in Indianapolis, In.).

When we started the GFCF Diet and reduced his animal meat protein intake, the odor occurred less often. After we added digestive enzymes, the odor seems to have become so infrequent as to be unnoted or has stopped altogether. Our special M.D. suggested this odor might be due to just the 'fact' that 'these' kids do have trouble digesting protein. After reading Mrs. Gottschall's info and Book, I concluded that the SCD diet turns out to be a high protein diet and my grandson not a suitable candidate for its use. Many of you whose kids do present the troubling Maple syrup-burnt sugar odors, do not despair, it probably is protein mal-digestion. However, I do think SCD is a 'legitimate diet', as much as the others in use, I think also that many of us can't use the same diets when there are other reasons to be considered.

- Grandma Peg

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People Mistrust MMR Because They Mistrust Politicians

To the Independent, UK

Sir: Despite what the Liberal Democrat Shadow Health Secretary says (letter, 5 November), your leading article's analogy between selling computers and selling the MMR triple vaccine to the public is perfectly valid.

For whatever reason, and despite "overwhelming engineering evidence", the computer manufacturer had been unable to convince his customers that there was not an overheating problem. So he gave in and fitted an unnecessary cooling fan at added cost. The alternative was to do nothing, suffer further deterioration in the product's brand image and see profits fall.

In the case of the MMR triple vaccine, the Government cannot convince the public that it is safe by continually quoting "overwhelming scientific evidence" because the public in recent years has come to believe that politicians, when it suits them, do not tell the truth. So the MMR product brand image is at rock bottom. It is little use saying that that the triple vaccination is safer than three single vaccinations because the public does not believe that either. If the Government continues to do nothing, a fair percentage of those who cannot afford or otherwise obtain the course of single vaccinations will avoid vaccination altogether, probably resulting in outbreaks of measles. It is not politically acceptable to make the MMR vaccination compulsory. There is only one viable solution: the NHS must offer a choice between MMR and separate vaccines.

It is not an issue of "overwhelming scientific evidence" or "over-simplification" as Paul Burstow suggests. In both the case of computer overheating and that of MMR, it is a marketing issue on how best to obtain a desired end result.

- Chris East, Royston, Hertfordshire

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SAR Makes it Easier

I am a school social worker with 11 years of experience in the public elementary schools. Since the very beginning, my work with students included in the schools, all on the higher-functioning end of the autism spectrum, has fed an interest in these children with ASD and their families.

Last summer I was lucky enough to gain a position at Giant Steps, Illinois, a private therapeutic day school just for children with ASD. Since then I have been learning to the point that I feel I am taking a doctoral-level course. What a lot I needed and still need to learn about working with these children at all levels of functioning! Naturally I am like a sponge trying to learn all I can about working with non-verbal children and children with some verbal abilities. I've learned how to use PECS, and my knowledge in visual supports is expanding daily. I am constantly challenged and constantly seeking new ways to work with and reach these children. I am so in awe of and respectful of their parents and families, and I also have learned so much from them!

I just wanted to send a thank you, because what you assemble is and will make it so much easier for me to stay on top of anything new. At work we have assembled a group of staff interested in furthering our knowledge and studying new research. Your newsletter will facilitate this.

- Mary Kay Longwell

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