E-News November 2004

Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for November 2004 - #1. As always, email your thoughts and/or questions. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

If this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for the Southern California autism support group called TACA. As always, email your thoughts and/or questions to us. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA?s. We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.

In This Month's Edition of TACA e-news:


1. Next TACA Costa Mesa support group meeting

 

Date:

Saturday, December 11th (always the 2nd Saturday of each month)

 

Time:

1:00pm – 4:00pm

 

Topic:

School District Roundtable - IMPORTANT NOTE: IF YOU PLAN TO ATTEND THIS MEETING – Please note the following:
a) You must be a parent of an autistic child
b) You must RSVP and provide age of child and school district name – please send a note to us
c) More info on the event to follow in the next week!

 

Place:

VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa

 

 

(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.) And remember, we are still a non-faith based group!

 

Directions:

405 FWY South, Exit Bristol
Right on
Bristol
Left on Baker
Go under FREEWAY.
The
Vineyard Church is on the corner just after the freeway - turn left onto the freeway access road, make FIRST right into the Vineyard's parking lot.


2. Upcoming TACA Costa Mesa Meeting Schedule

All meetings at the Vineyard:

December 11, 2004: School District Roundtable - IMPORTANT NOTE: IF YOU PLAN TO ATTEND THIS MEETING – Please note the following:
a) You must be a parent of an autistic child
b) You must RSVP and provide age of child and school district name – please send a note to contact us
c) More info on the event to follow in the next week!
Much more is being planned for 2005! Stay tuned!

TACA Has Seven California Meeting Locations:

1.
Costa Mesa
2nd Saturday of each month (info in item #1 for meeting topics and details)
2. West Hills: (the Valley, man) 1st Sunday of every month, 7-9 p.m.
Location: Jumping Genius – 22750 Roscoe Blvd., West Hills (the corner of Roscoe Blvd. & Fallbrook Ave.)
Info: Contact us
3. San Diego:

4th Tuesday evening – 6:30- 8:00 p.m. – Info: Contact us
Dec. 7 - Dr. Susan Daniels "The Sensory Learning Center" (We're combining the Nov. and Dec. meetings due to the holidays.)

4. Corona:

3rd Saturday – 1:30–4:30 p.m. For more info: Contact us
(New location starting January 2005)
December meeting: A holiday potluck – please email Christy for time, location, and details

5. Torrance: 3rd Monday of each month at Whole Foods Market on PCH in Torrance – 6:30 - 9:00 p.m.
For more info: Contact us
6. Visalia:

3rd Wednesday of month
Time: 6 p.m. "Happy Hour" with GFCF snacks and coffee
6:30-8:30 p.m. Speaker
Location: Kaweah Delta Multi-Service Center Auditorium, 402 W. Acequia, Visalia. Information: Please contact Lynne Arnold
December: NO MEETING. Let's take a break for the holidays!

7. Santa Rosa: (typically) 2nd Tuesday of each month at Swain Center – 795 Farmers Lane, Suite 27, Santa Rosa – 7:00 - 8:30 p.m. For more info: Contact us

3) General News

Article A: IDEA – Re authorization Update

CA DISABILITY COMMUNITY ACTION NETWORK
CAPITOL NEWS REPORT #196-2004 NOVEMBER 18, 2004 - Thursday
Linking people to disability rights and unified action
Individuals With Disabilities Education Act
HOUSE-SENATE IDEA CONFERENCE REPORT AVAILABLE

SACRAMENTO - The House-Senate Conference Committee's report that details the compromise that reauthorizes the Individuals with Disabilities Education Act (IDEA), the landmark federal special education law is available on the congressional website. The House-Senate joint committee passed the compromise on a strong bi-partisan vote yesterday.

Both the Republican and Democratic leaders on the committee strongly supported the compromise - including Sen. Judd Gregg (R-NH), chair of the senate Committee on Health, Education, Labor and Pensions; Rep. John Boehner (R-H), chair of the House Committee on Education and the Workforce; Sen. Edward M. Kennedy (D-Mass) and Rep. George Miller (D-Ca), the ranking Democrats on the conference committee.

The compromise, replaces the original contents that was in HR 1350. The original version of that bill was fiercely opposed by many parent and family advocates and disability advocacy organizations, saying it would roll back the rights gained over the years for children with special needs. The compromise, while having some areas that concerned some advocates, was generally well received - though details are being reviewed. The reauthorization of IDEA is expected to be approved with strong bi-partisan support by Congress on Friday and sent to President Bush.

A full update on IDEA will be discussed at the next scheduled Disability Rights Townhall Telemeeting, on December 2, Thursday afternoon at 1:00 PM. The top aide handling the IDEA reauthorization for Sen. Edward M. Kennedy (D-Mass) will be on hand for the telemeeting to give an update and answer questions. Those interested in participating should sign up at the CDCAN website at www.cdcan.us or call Sheri Van Wert at Training Toward Self Reliance (TTSR) at 916/442-8877 ext 100. Other issues, including Medi-Cal Redesign will also be discussed, with the State's top Medi-Cal official participating, providing a brief update and answering questions.

Here are the links for documents related to the 2004 reauthorization of IDEA:

House-Senate Conference Report 11/17/2004
http://thomas.loc.gov/cgi-bin/query/C?r108:./temp/~r108lFhNIL

It will also be posted on the CDCAN website at www.cdcan.us under "legislation - federal"
Reprinted form: Marty Omoto, director/organizer WEBSITE: www.cdcan.us [new address]
1225 8th Street Suite 480 Sacramento, CA 95814 VOICE PHONE: 916/446-0013
FAX number: 916/446-0026 email: martyomoto@rcip.com

MORE ON IDEA REAUTHORIZATION FROM A CONCERNED PARENT:
As most of you may know by now, the IDEA hearing was yesterday on Capital Hill. From the reports I read, the actual hearing was rather anticlimactic, and the bill will go to the House & Senate for approval votes. President Bush is expected to sign the bill. You may read the bill at
http://www.oclb.info/HR1350(ConferenceReport).htm

I've been reading the bill. The intent is to make it harder for parents to use procedural violations to win cases. The reason counsel for parents used procedural violations was that they were easier to prove in court (see Reed Martin's website for examples). It was black/white; the district either did do or did not do a particular thing whether it be to hold a timely meeting, provide assessments, etc. Proving appropriateness of an IEP is much, much harder.

Parents must now be more vigilant about ensuring an IEP has goals that provide an appropriate education for their child. Goals drive services. If you think that your child has a need, state it in the form of a goal rather than a specific service. EX: 'My child will hold a conversation with a peer for a minimum of 5 minutes' rather than my child needs 2 hours per week of Speech.

For parents, I consider part (5)(A) of the Findings section is extremely important. It should set the tone for IEP meetings.

It reads as follows (emphasis mine):

(5) Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by--

(A) Having high expectations for such children and ensuring their access to the general education curriculum in the regular classroom, to the maximum extent possible, in order to--
(i) Meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children; and
(ii) Be prepared to lead productive and independent adult lives, to the maximum extent possible;

My take on this is we, as parents, must be well prepared for IEP meetings. For children in K-12, we must ensure that the IEP is written with BOTH educational and developmental goals that meet our high expectations for our kids. DO NOT let the district DUMB DOWN the IEP.

A personal note… my daughter is in third grade. She took the California standardized test last year and had very good scores. She has now been identified as gifted because of that. Last year the resource teacher recommended that she be tested to see if she qualified for GATE (Gifted and Talented Education). Her classroom teacher did not submit her name as her classroom teacher felt that the test would be too stressful. As parents, we were not told of these conversations UNTIL this week during our parent conferences. However, I when informed my daughter that her test scores put her in the gifted range, she has started doing 100% of the extra credit homework her teacher assigns. She had refused to attempt it before.

Bottom line - Demand High Expectations!

-Gina Levy

PS - if your school has parent conferences with your classroom teacher and your child has support in the general ed classroom from the resource teacher, request a SEPARATE conference with the resource teacher.

Article B: Treat your cold Naturally By Dr. Joseph Mercola

Every year upper respiratory infections such as the common cold and sore throat send 5 million people fleeing to their local pharmacy to stock up on over-the-counter (OTC) medications. The danger here is that most people don't consider the risks associated with these seemingly safe OTC medications.

Since OTC medications don't require a prescription many people assume that makes them safer to take than prescription drugs. Also, easy accessibility is often mistaken for safety.

It's important not to lose sight that OTCs are still drugs that contain many powerful ingredients. For example, Bayer, maker of the popular Alka-Seltzer Plus cold medicine, was ordered to pay $400,000 to a consumer who claimed the ingredient, phenylpropanolamine (PPA), had caused a stroke. The well-known OTC cold medicine endured another fizzling blow after a state court jury in Texas found that the U.S. unit of Bayer produced a product considered defective and dangerous.

Create a False Need for OTC Sinus Medication

Every year Americans spend a whopping $1 billion on OTCs to treat sinus headaches. The question this brings to mind is, "How did OTC sinus medications turn into a $1 billion dollar industry?"

Daily exposure to TV commercials for sinus headache remedies has created a misconception among Americans that sinus problems cause headaches. These advertising ploys supported by the pharmaceutical companies have helped OTCs successfully reach their goal -- create a need for OTC medications by convincing the public they are suffering from sinus headaches. This direct-to-consumer advertising is not only driving people straight to their nearest pharmacy, but directly to mistreatment.

These dollars are not only being wasted but are also going towards treatment of the wrong condition, as 97 percent of the people experiencing sinus headaches are actually suffering from migraines.

The Health Costs of Mistreatment

One of the major consequences of mistreatment by relying on OTC medications is exposing your body to unnecessary side effects. Some of side effects of antihistamines and decongestants include:

• Drowsiness
• Nervousness
• Agitation
• Palpitations
• Sleeplessness

This doesn't include the chronic users of certain nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Motrin), which has been linked to gastrointestinal and liver damage. Also, the highly marketed acetaminophen (Tylenol), if taken in excess, has been shown to be toxic to the liver.

Prevention -- The Doctor's Orders

It is particularly important to be highly proactive in the winter months as we have far less sunshine. Not getting enough sunshine on our skins in the winter is one of the primary reasons that we become sick. The total amount of sunshine is also significantly decreased in the winter for most of us which is another major factor. If you are one of the fortunate subscribers reading this newsletter in a subtropical or tropical area than it is far less likely that you and your community will get sick this winter as one of the primary reasons for catching a cold, not enough sunshine, is simply not an issue for you. So if you are fortunate enough to live in such an area please take advantage of the sun and get some exposure. But remember never to get burned and throw away the sun screen as most of the benefits will be avoided if you use it.

Rather than putting your health at risk by taking OTC drugs that solely mask the symptoms and fail to treat the underlying symptoms, your best option is taking a preventative approach.

By far, it is most effective to be proactive and not get colds in the first place. It seems the major reasons why one gets them to begin with are:

• Not following a proven healthy diet (It is absolutely vital to avoid sugars, sweets, pastries, cookies, cakes and candies if you want to avoid colds, but especially if you are already sick as these will seriously impair your immune response.)
• Stress
• Not enough sleep
• Any combination of the above

So clearly the first approach is be careful and avoid food choices that will sabotage your health. If you are stressed you can use an amazing effective energy psychology tool like EFT, to address the foundational and core reasons as to how the stress is impairing your immune system. It only takes a few minutes to learn this technique with my free on-line manual.

Many people struggle with getting a good night sleep. If you struggle with this please read my sleep guidelines. Please also understand that improving your melatonin levels are key to getting a good night's sleep, so make sure you have exposure to bright sunlight in the daytime and sleep in absolute darkness at night. I strongly recommend installing black out shades and/or curtains in your bedroom.

If you don't have them already installed you can go to the grocery store and cut out some large pieces of cardboard to fit your window. It is important you sleep in cave like darkness and not be able to view your hand in front of your face. Remember no night lights or clock radio lights and never turn on the light should you need to get up and use the rest room. Any small amount of light will instantly shut off your melatonin production. Please also remember that any alcohol use is a sure fire way to stop your body's production of melatonin for that night.

Another practical prevention tool is proper hand washing, as it is critical to keeping colds and other viruses at bay. One word of caution is avoid using antibacterial soaps. These soaps are completely unnecessary and could easily cause more harm than good. The antibacterial compounds found in most of these soaps sold in the United States are likely contributing to the spread of antibiotic-resistant bacteria.

In my practice, I have found the best way to maintain the ultimate hygiene and protect your immune system from colds is by using the Clenzology Advanced Hygiene System. This hygiene kit is simple to use and only takes a matter of minutes, which makes it ideal for families with young children.
Most importantly, the Clenzology soap is not antibacterial and it is capable of reaching the tens of thousands of germs on the backs and palms of the hands, on the fingers and under the fingernails that are breeding grounds of infections such as the common cold.

Treating Your Cold Naturally

If, for whatever reason, you have come down with a cold, my personal recommendation would be to use zinc lozenges. I have been using zinc in my practice for over 15 years, far before it was popular.

When using zinc lozenges, it is important to recognize that they need to be sucked on, NOT swallowed, and smaller doses more frequently seem to work better. I usually advise patients to suck on a quarter lozenge every 30 minutes. If started early, this approach seems to work well for the clear majority of patients.

A word of caution should be heeded though; if the lozenges make one nauseous they should be stopped immediately as that is a sign of zinc toxicity.

One of the most exciting, simple and inexpensive natural options to treat a cold once you have it is to use hydrogen peroxide in your ear canals. It is amazingly effective especially if used at the first sign of a cold. Don't ask me how it works, but it seems to help more than 75 percent of those that use it. Please be sure to review the peroxide page for more information.

Article C: Scientists target drugs and other environmental agents that may play a role

Diana Parsell

Beth Crowell remembers the day in 1989 when her triplets, Casey, Andrew, and Erin, were about 15 months old. Crowell put Erin down on the floor to crawl. "But she just sat there, fixated on the red shag carpeting," says the Housatonic, Mass., mother of four. The toddlers were often sick, and "none of them made eye contact," Crowell recalls. A medical evaluation was devastating: All three babies had autism. Children with autism typically have trouble communicating, interacting socially, and controlling their behavior. Those most severely affected seem to live in a world of their own. Various treatments sometimes reduce symptoms, especially if children are diagnosed early. But there is no cure for autism, which has baffled the medical community since the disorder was first described in 1943.


STEADY PROGRESS. Ben Bakter, who has autism, works with therapist Denise Jennings.
C. Bakter, NAAR

The Centers for Disease Control and Prevention (CDC) recently estimated that 1 of every 1,000 children may have autism, or 1 in 500 if those with autism-related disorders such as Asperger syndrome are included.

For years, Crowell combed the medical literature trying to figure out what might have gone wrong in her triplets. She doubted that a genetic mutation was solely responsible. Crowell came to suspect that terbutaline, a drug she had taken during pregnancy to prevent premature labor, might have played a role.

A team of researchers in Baltimore found her assertion plausible. They knew of experiments showing that rats exposed to terbutaline before birth had brain abnormalities. More recently, they completed a yet-unpublished clinical study that found a higher-than-expected incidence of autism in both children in sets of fraternal twins whose mothers also took terbutaline during pregnancy. The investigators are Andrew Zimmerman of the Kennedy Krieger Institute, independent researcher Susan Connors, and researchers at Johns Hopkins Medical Institutions.

This research reflects a shift in scientific thinking about what causes autism, and a push to look harder at potential environmental influences.

"For years, the emphasis [in autism research] has been on neurobiology and genetics," says Michael Cuccaro of Duke University in Durham, N.C., a psychiatrist specializing in autism. "It was thought we could identify the causes if we could understand those connections, but we're still left searching for causes. There was a missing piece of the puzzle, which was the environment."

Some scientists are convinced that environmental factors must be at play because autism appears to be increasing rapidly. They argue that genetic factors alone can't account for such rapid growth. For example, California Department of Developmental Services data show that autism cases in the state more than doubled between 1987 and 1998. Scientists from the CDC found a 10-fold increase in autism in Atlanta from 1986 to 1996.

However, perinatal epidemiologist Lisa Croen of Kaiser Permanente's Division of Research in Oakland, Calif., says that some of the apparent increase probably reflects inconsistencies in data-reporting methods and changes in diagnostic criteria over the past 15 years.

A highly controversial piece of the autism picture in the past decade has been the issue of whether childhood vaccines can trigger the disorder. Suspicions arose because autism is often diagnosed around the time when children receive a series of routine vaccinations. A mercury-based vaccine preservative called thimerosal seemed a likely culprit.

In the past 5 years, thimerosal has been phased out of most pediatric vaccines, and a committee of the National Academies' Institute of Medicine in Washington, D.C., has consistently found no conclusive evidence for an autism-vaccine connection. But two new studies are reviving the argument that thimerosal can act as an environmental factor promoting autism in certain children.

Geneticist Thomas Wassink of the University of Iowa in Iowa City says that most researchers studying the genetics of autism now assume that the disorder is caused by interplay between genes and factors from outside the body. He speculates that environmental factors trigger the disorder in children in whom 5 to 15 genes have created an underlying susceptibility. Gene hunters are homing in on several autism-related genes, he says.

Much of the current research on autism is in early stages. Payoffs in treatments or preventive measures are likely to be years to decades away.

Maternal Mediation

Environmental agents under scrutiny in autism research include drugs, vaccines, viruses, and poisonous substances such as lead and mercury. "There certainly isn't a shortage of environmental suspects that may play a role in autism," notes Andy Shih, chief science officer of the National Alliance for Autism Research in Princeton, N.J. "But these are not all necessarily artificial or manmade and may have to do with influences in the womb."

Zimmerman, a pediatric neurologist, is one of many specialists who think that environmental influences in utero may contribute to autism by disrupting normal early development. To a fetus, any effect from outside the womb—hormones triggered by a mother's stress, for example—is environmental. "It's anything that affects pregnancy," says Zimmerman.

Isaac Pessah, director of the Center for Children's Environmental Health and Disease Prevention Research at the University of California, Davis, agrees. He also points out that newborns and infants are especially vulnerable to the damaging effects of toxic exposures because the human nervous and immune systems "undergo considerable remodeling in the first 2 years of life."

Some scientists suspect that maternal viral infections are one of the principal non-inherited causes of autism. Epidemiological studies have found a significantly increased risk of autism in the offspring of mothers exposed to the rubella, or German measles, virus early in pregnancy.

In the Jan. 1, 2003, Journal of Neuroscience, scientists led by Paul H. Patterson of the California Institute of Technology in Pasadena reported that when pregnant mice were infected with a modified human-flu virus, they produced offspring that, as adults, behaved in ways similar to those of many autistic children. Compared with a control group, the affected mice interacted less and were unusually anxious under mildly stressful situations and around unfamiliar objects.

The scientists also found unusually low numbers of critical signaling components, called Purkinje cells, in brain tissue of the affected mice. Autopsies of people with autism have revealed fewer than normal of these cells.

In an upcoming International Journal of Developmental Neuroscience, Patterson's group reports that altered brain development in the mice doesn't appear to occur as a direct result of viral infection in the fetus. Instead, "there's evidence it's related to a natural immune response in the mother, [but the] mechanism is something we're still working on," says Patterson.

Some of the molecules that the mother uses to fight the virus may be crossing the placenta and affecting brain development in the fetus, he explains.

If so, the problem wouldn't be specific to the flu virus. "Lots of kinds of infection could lead to the same effects," Patterson says.

Immunity Role?

Support is growing for the idea that immune system problems in a pregnant woman or developing child set the stage for autism.

Zimmerman and his colleagues recently found that rheumatoid arthritis and other autoimmune disorders, in which the immune system attacks parts of the body, are unexpectedly common in families of autistic children. Zimmerman says that other studies have shown that from 30 to 70 percent of autistic children have subtle immune system abnormalities, although such children aren't exceptionally vulnerable to everyday infections.

To study whether impaired immunity might put some children at risk of developing autism after being exposed to thimerosal, Mady Hornig of Columbia University and her colleagues did experiments using mice vulnerable to autoimmune diseases. The researchers injected newborns of this susceptible strain and of two other strains with thimerosal alone, with a thimerosal-vaccine combination, or saline solution. The doses were comparable to those that children receive in typical vaccinations.

In the September Molecular Psychiatry, Hornig's team reports that virtually all the mice in the immune-compromised strain that received either form of thimerosal showed autism-like symptoms. They behaved oddly and had delayed growth and brain abnormalities. The other two strains of mice showed no such effects.

Some scientists caution against reading too much into the findings. Epidemiologist Craig Newschaffer of Johns Hopkins says that animal experiments such as this are important to determine the physiological effects of exposure to toxic substances. But, he notes, it's impossible to say with certainty that lab animals exhibiting certain kinds of behavior have autism or that what happens in lab animals translates to people. "We have to keep in mind that these are largely preliminary studies," he says.

Potential Pathways

As in other diseases, finding the roots of autism is challenging because things can go awry at so many points on the long and complicated road to normal human development.

In the April Molecular Psychiatry, neuropharmacologist Richard Deth of Northeastern University in Boston and his colleagues described a biochemical pathway that they say is an avenue by which thimerosal and other compounds could cause neurodevelopmental disorders such as autism.

When the researchers exposed human neuronal cells to low doses of thimerosal, the chemical activity called methylation dropped significantly. Deth explains that methylation, in which single carbon atoms are transferred from one molecule to another, plays a central role in normal patterns of gene expression. Therefore, he says, "it is no wonder that [agents] capable of interfering with DNA methylation could cause developmental disorders such as autism."

On Oct. 5, Deth described his findings to a House of Representatives Labor and Health and Human Services subcommittee in Washington, D.C. He told the panel that his team recently determined the specific molecular mechanism by which thimerosal inhibits methylation. An enzyme critical to methylation, methionine synthase, uses an active form of vitamin B12 to complete its chemical function, Deth explained. Thimerosal interferes with the conversion of dietary forms of B12 into the active form and so impedes DNA methylation and disrupts some normal gene actions.

The work, Deth says, suggests that children with mutations in genes that encode methylation-related enzymes are at higher risk of damage from toxins.

The researchers found that exposing neuronal cells to lead, ethanol, and aluminum also disrupts methylation, but through different mechanisms.

Meanwhile, Connors, Crowell, and their Baltimore colleagues hypothesize that the drug terbutaline, which is usually used for asthma, leads to autism by interfering with beta 2 adrenergic receptors, cell-membrane proteins that play a major role in brain development. Animal studies of terbutaline have shown that it over stimulates beta 2 receptors, says Connors.

As a result, she explains, the receptors produce excess cell-to-cell signals, confusing the development process. Connors and her colleagues suggest that this effect alters nervous system growth, putting some children at risk of developing autism when exposed to various environmental insults.

" We don't want to emphasize terbutaline exposure per se [because] there isn't only one mechanism that can over stimulate beta 2 receptors," says Connors. She notes that stress hormones, for example, bind to beta 2 receptors, which suggests that unusually high maternal stress during certain stages of pregnancy might also contribute to some cases of autism.

Crowell, whose triplets are now teenagers, has been a co-investigator of the Baltimore studies.

She says that life as a parent of autistic children "continues to be challenging. Our children can learn, so we're constantly having to advocate for education. Being vicious in advocating for our children pretty much consumes my day."

If you have a comment on this article that you would like considered for publication in Science News, send it to editors@sciencenews.org. Please include your name and location.

Article D: Autism linked to overactive immune system, study finds

By ANDRÉ PICARD PUBLIC HEALTH REPORTER
November 16, 2004 -
http://www.theglobeandmail.com/servlet/ArticleNews/TPStory/LAC/20041116/HAUTISM16/TPHealth/

Autism, a mysterious and increasingly common disorder, may be caused, at least in part, by a malfunction in the immune system, a new study suggests.

Researchers studying the brains of people with autism say they have found strong evidence that parts of the immune system were overactive, causing chronic inflammation. This inflammation appears to cause damage to the brain in a manner similar to what is seen in other neurodegenerative conditions such as Alzheimer's disease, Parkinson's and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). Autism is a brain disorder that appears in early childhood. The cause, or causes, are unknown, though immune reactions have long been suspected as playing a role.

"These findings reinforce the theory that immune activation in the brain is involved in autism," said Dr. Carlos Pardo Villamizar, a neuroimmunologist at Johns Hopkins University School of Medicine in Baltimore, Md.

There are a number of theories about what triggers the damaging inflammation, including birth trauma, exposure to toxins, childhood vaccines, diet and viruses.

The new research throws cold water on a number of these notions, suggesting strongly that immune system problems begin in the womb -- likely in the second trimester when the nervous system is developing -- and continue throughout life.

The study, published in today's edition of the Annals of Neurology, was conducted using the brain tissue of 11 people with autism, aged 5 to 44, who died from accidents or injuries. The victims' brains were donated to a large U.S. autism tissue program that promotes research.

Researchers measured a number of immune-system proteins called cytokines and chemokines, and found abnormal patterns that suggested chronic inflammation. These measures were compared to those conducted on non-autistic victims who died in similar circumstances, which showed no such inflammation.

"The pattern of cellular and protein findings indicated that they are part of the innate immune system and do not appear to be caused by immune abnormalities outside the brain," Dr. Pardo said.

He said the inflammatory response -- which is one way the immune system responds to threats -- indicates the brain is fighting back against some other process that is damaging brain cells.

What is not clear is what is triggering the immune system to become overactive during fetal development. The cause could be genetic, environmental, or a combination of the two, Dr. Pardo said.

He said the finding opens the door to the possibility that once the mechanism is unraveled, a simple measure may exist to prevent autism, perhaps one as devilishly simple as folic acid supplementation, which
has virtually eliminated neural tube defects like spina bifida and anencephaly. Those devastating neurological conditions turned out to be caused by a deficiency in one micronutrient.

Autism is a spectrum disorder, meaning symptoms can vary broadly in those who are afflicted, from mild to disabling. Generally speaking, children with autism have difficulty with social interaction and communication, can display repetitive behaviours and develop unusual attachments to objects and routines.

Autism is often complicated by the presence of other neurodevelopmental conditions, such as Fragile X syndrome, Down syndrome (both common forms of mental retardation) and epilepsy. It is estimated that between two and five in every 1,000 children born will develop autism before school age. The Autism Society of Canada estimates the incidence rate in this country is one in every 286 births. The condition is about four times more likely in boys than girls.

As part of their study of the immune-system response, researchers also examined the cerebrospinal fluid of some autistic people, where they found corroborating evidence of chronic inflammation.

Dr. Andrew Zimmerman, a pediatric neurologist at Kennedy-Krieger Institute in Baltimore and a co-author of the research, said this means it may be possible to diagnose children with autism by testing the
spinal fluid.

He said it is also conceivable that autism could be treated with anti-inflammatory drugs (such as over-the-counter painkillers) but he stressed that is highly speculative.

Currently, there are no medical treatments for autism. Rather, children are treated with intense cognitive therapies, but this approach is expensive and controversial.
*
The material in this post is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes.
For more information go to:
http://www4.law.cornell.edu/uscode/17/107.html


4.            Vaccine News

Article A: Some Believe Flu Vaccine Can Cause Autism In Children

UPDATED: 10:17 am EST November 18, 2004
LOUISVILLE -- Below is a transcript from Steve Burgin's Target 32 investigation, shown exactly the way it appeared.

Anchor: "There's been a lot of attention given to flu shots this year because of a major shortage of vaccine. That shortage and a recently released report on vaccine safety have given some families new reasons to speak out. They are families of autistic children."

Anchor: "Target 32 investigative reporter Steve Burgin has been looking into the controversy. And he's here with more. The rate of autism is 15 times what it was a decade ago, but why?"
Burgin: "Hundreds of studies have been done on whether there is any connection between a mercury preservative in childhood vaccines and autism. That preservative can still be found in some vaccines in trace amounts.
Mother of autistic child Emlyn Riggle: "He developed beautifully his first year of life. At 10 months he was smiling and giggling."
Burgin: "But, Emlyn Riggle says, at 14 months, her son Evan stopped developing, stopped making eye contact, and seemed to be in a fog."
Riggle: "Evan, look here."
Burgin: "At 19 months, Evan was diagnosed with autism."
Riggle: "And the pictures were he's got that glazed look in his eyes. We happened to notice within a few days to a week or so of a vaccination containing thimerosal."
Burgin: "Thimerosal has been used since the 1930s as a mercury-based anti-bacterial preservative. One of its first uses was in the over-the-counter product merthiolate."
Dr. Boyd Haley: "No one can sit and tell you that thimerosal is not toxic. They removed merthiolate from the market, they took it out of solutions for contact lenses, they took it out of several others, but they left it in vaccine and decided it was a good idea to inject it in a child on the day he was born?"
Burgin: "In the 1990s, the Centers for Disease Control (and Prevention) added shot after shot to a child's vaccine schedule, without consideration of mercury exposure. In a single visit, a baby could get 60 times the EPA's recommended mercury limit."
Burgin: "In 1999, the Food & Drug Administration found 'no evidence of harm,' but, as a precautionary measure, the federal agency 'urged manufacturers to reduce or eliminate thimerosal in vaccines as soon as possible.' But, it's still being used in flu vaccines today, though in trace amounts."
Dr. W. Paul McKinney: "It's in the range of millions of a gram -- a very microscopic amount. Truly, that gets diluted out in the blood stream when it's injected."
Burgin: "Whether thimerosal triggers autism or autism-like symptoms in some children has been the subject of hundreds of studies. In 2001, the Institute of Medicine said there wasn't enough evidence to make any kind of finding, but in its final say on the matter last spring, the IOM concluded, based on several studies, that 'the body of evidence favors rejection of any casual relationship between thimerosal-containing vaccines and autism.' But that did not end the controversy."
Haley: "They're bright, educated people, and how anyone can look the data presented at that meeting, the last IOM meeting? I was there and I presented and to make that statement that we should never look at thimerosal as casual and abort all research in this area (is) transparent and systematic of somebody participating in a big cover-up for reasons I can not tell you."
Burgin: "Parents like Emlyn Riggle believe the government is playing Russian Roulette with children because some of them appear to be more susceptible to autism. Her son is now going through mercury detoxification."
Burgin: "Moms like Emlyn Riggle have problems believing the government, and they want more research. Flu shots are important in saving lives. And there is a thimerosal-free flu shot on the market, though it too is in short supply this year."

Article B: Critics Raise Questions On Flu Shots

By Virginia Anderson for The Atlanta Journal-Constitution

To hear Wendy Callahan tell it, flu vaccine is more like fillet of fenny snake and tooth of wolf than ambrosia from the public health gods.

"It has aluminum and formaldehyde and mercury and antifreeze," said Callahan, of Hawthorne, Fla., co-director of Vaccine Liberation, a group of ardent vaccine foes. "Why would anyone want to put that into their bodies?"

The Vaccine Adverse Event Reporting System reports claims of about
11.4 adverse events per 100,000 vaccinations of all types. Most of those reactions are fever and sensitivity at the site of injection. But serious adverse reactions, including death, have occurred from vaccines other than for flu.

Callahan's view may be extreme — most flu vaccine does have mercury and formaldehyde but not antifreeze — but she is not the only one who questions flu vaccine.

Many people, including some doctors, want to know what's the fuss over something that most people lived without for decades.

"I haven't had a shot since grade school," said Tim Gross, director of clinics for Life University, the school of chiropractic. "The most important thing is to live a healthy lifestyle."

While millions of Americans have spent weeks decrying the shortage of flu vaccine, Callahan and others believe this year's public health fiasco puts much-needed brakes on a wasteful and even dangerous trend: quick-fix shots to compensate for Americans' poor health habits.

Here's a breakdown of their criticisms: The number of deaths from flu — 36,000 — is exaggerated. Most flu deaths are among the elderly, many of whom already were ill.

"It's an artificial number," said Sandy Springs chiropractor Michael Tumminello. "Folks who die from flu are usually elderly, those in nursing homes. And when you compare that to how many would have died anyway, the number's not real."

Of the 36,000 who die from influenza, 90 percent are older than 65.
Within that group, those who are 85 and older are a "substantial" percentage of that total, according to the national Centers for Disease Control and Prevention.

Death certificates nationwide that list influenza as cause of death actually number in the hundreds — 257 in 2001 and 753 in 2002, the most recent years for which numbers are available, according to the CDC.

The agency counters, however, that flu deaths are vastly underreported. Officials also argue that flu typically does not kill but that it weakens the lungs for pneumonia to set in, then kill. Looking only at influenza as the final cause of death therefore misleads.

Because of the underreporting, the CDC uses sophisticated statistical models to reach the number of estimated deaths, using data from the National Center for Health Statistics.

Why have public health officials expanded influenza vaccine recommendations this year to include very young children? Can it be healthy to put even small amounts of toxins like mercury into the human body, particularly the bodies of babies? Although no scientific evidence exists of a link between childhood vaccines and certain disorders, critics cite increased incidence of autism, learning disorders and asthma among vaccinated children.

"If you look at all the food allergies and the increased rates of asthma, we have to wonder," said Barbara Loe Fisher, co-founder and president of the National Vaccine Information Center in Vienna, Va. "Perhaps preventing all infection in childhood is not a biologically wise thing to do. This is not a trivial question."

Dr. William Schaffner, chair of preventive medicine at Vanderbilt University Medical Center, scoffs at worries about mercury in the flu vaccine and notes that a mercury-free form is available in a typical year.

"Mercury occurs in the natural environment, and people are exposed all the time," Schaffner said. "The issue is not whether or not something is present but what the dose is. These studies have been revisited time and again, and the scientific community is convinced they are safe."

The Vaccine Adverse Event Reporting System reports claims of about
11.4 adverse events per 100,000 vaccinations of all types. Most of those reactions are fever and sensitivity at the site of injection.

But serious adverse reactions, including death, have occurred from vaccines other than for flu. Of the total adverse reactions, about 14.2 percent have resulted in brain damage, permanent disability or death, according to figures from the VAERS.

Public health officials are quick to counter that adverse responses to flu shots are rare and seldom serious. And despite the myth that the vaccine can even cause the flu, doctors quickly note that the flu shot does not cause the flu, even though the nasal mist can. The flu shot is made of inactivated virus, while the mist uses live, but weakened, virus.

The number of vaccines now recommended for American children has mushroomed in the past 25 years. In 1982, seven doses to ward off seven diseases — measles, mumps, rubella, polio, diphtheria, pertussis and tetanus — were recommended for children younger than 2.

This year, with the addition of flu vaccine, the CDC recommends 22 doses for 12 diseases for children 6 months to 23 months, said CDC spokesman Curtis Allen. For babies younger than 6 months, the CDC recommends 20 doses for 11 illnesses.

"For the most part, these diseases have been reduced by 99 percent,"
Allen said.

Because of that, Schaffner said that adding vaccines to a children's schedule makes sense.

"We just built a brand-new children's hospital here at Vanderbilt, and we have incredibly modern and sophisticated, state-of-the-art treatment facilities. What we did not build here in the children's hospital was a polio ward. And we did not build a polio ward because we have a vaccine that wiped out polio."

On the flu vaccine in particular, Schaffner said doctors have learned more about the danger of flu in the very young.

"If you speak with any pediatrician, they will tell you, to the point of tears, that perfectly healthy children can be at death's door and in intensive care within 48 hours."

Why do we need flu shots now if millions of us survived childhood without them? If people eat right and exercise, can't they avoid the flu?
Even if you are healthy, you can still transmit influenza, say public health officials and doctors, and vaccination is the best course of action. And getting a flu shot augments a person's good health practices, much like wearing a seat belt, they stress.

Busy, mobile lifestyles of today's families increase transmission rates.
Eating right and exercise are important, doctors said, but one person's healthy lifestyle cannot stem a public health crisis.

A flu shot could not only save lives but also save on days lost from work and financial and physical costs from an estimated 200,000 yearly hospitalizations. Some public health officials estimate that days lost from work could cost $20 billion this year alone.

Some doctors said they think the concern about flu vaccine shortage this year is more about fear than reality, especially among adults. For that, blame Sept. 11, they said.

"There's just general concern about infectious diseases," said Dr. Boyd Lyles, medical director of Heart Health and Wellness Center in Dallas. "People want to be protected, and this is one area where people feel like they had protection. Then it's taken away, and it's scary. But do most people need the flu vaccine? Probably not."


5. Brett’s Story – Not Just About Autism
The Medical Maze – Chiari 1 Brain Malformation

At age 2 ½, my son Brett was diagnosed with autism. We began ABA therapy immediately and began the long parade of doctor visits.

We started with a developmental pediatrician who recommended a full time ABA program for Brett. The county gave us a 20 hour program instead. ABA was an absolute nightmare for us. Brett did nothing but scream for about 6 long months. He finally submitted to the teaching, but learned very little. During this time, I talked to parents, teachers and many others. I began making doctor appointments.

Things weren’t getting better. As a matter of fact, they were deteriorating. Brett was always throwing tantrums, never sleeping and he was ALWAYS sick.

We went for a second opinion regarding his diagnosis. Autism was confirmed and advice of more therapy was given. We went to a neurologist who suggested we institutionalize Brett and advised us not to come back to see her until we did! The follow up appointments with the developmental pediatrician proved to be fruitless. She informed me that I was a bad mother and my parenting skills were what was keeping my son from sleeping. Outraged with these doctors, I went home and cancelled all future doctor appointments and vowed to teach my son myself.

Well – I did just that….. for about a year and a half. Brett was only happy when he was watching television or eating one of his 4 favorite foods.

I decided to utilize one of the things he loved to teach him. Just before Brett’s fourth birthday, I made my first home teaching video for Brett. He began watching the video and continued to watch and watch. I was so anxious to see what the end result would be…. Who knew? About 2.5 weeks after the first tape was made, Brett magically started to mimic what I had put on the video. For the first time in his life, he used functional language. That was the beginning of the next 1 ½ years of my home videos and the beginning for Watch Me Learn, my video company.

Well – during that year and a half, we were forced to revisit the medical community when Brett began having seizures. Again, we went to another neurologist who confirmed the seizures but offered no reason or hope for resolving the issue. Brett began medication and had a horrible reaction to the meds. The doctors thought I was crazy when I told her that Brett reacted VERY badly to the medication…Very reluctantly she changed his medication. She next suggested a stimulant to treat the hyperactivity and had no answers or suggestions for his sleep problem. I moved on and went to more doctors with similar answers.

I realized that the doctors I had seen were not going to offer any hope nor could I continue video taping for the rest of Brett’s life. In desperation, I turned to the internet as so many parents have. I was fortunate enough to find a woman who was the mother of a recovered child. She convinced me to investigate the DAN! protocol and see a DAN! doctor.

So, I turned my house over and went GFCF and went to a DAN! doctor. Extremely skeptical about the whole thing, I had my doubts that any of this would work. I started the diet and saw no changes. I then started the supplements and saw little progress. I then started to treat the yeast with anti-fungal medications and saw an improvement in behavior.

The next step took me across the country to the DAN! Conference where I met Brett’s present DAN! doctor. The conference gave me so much hope and the strength to keep searching for the answer to Brett’s problems. I Brett’s new doctor called for more blood work and more tests. Again, more DAN! treatments…. some were successful, some were not. The blood test led us to a metabolic specialist who threw his hands up in the air and said “I have never seen blood work like this. Let’s run more tests.” So, more tests and no answers.

He also suggested B12 shots, more supplements and now we are considering IVIG therapy for the horrendous immune system. Maybe we should do an MRI.

So, under the care of my DAN! doctor, we did an MRI. We found a Chiari 1 malformation. Shocked, I made appointments for more MRI’s, cat scans and surgeon and neurologist appointments. Our first visit to the neurologist confirmed that yes, Brett did have a Chiari 1 malformation. But the neurologist did not think Brett had the symptoms…. Because he was not complaining of headaches. Well, how can a child with very limited language communicate that his head hurts? Maybe he doesn’t know any different.

The surgeon told me that surgery was not a cure for autism so he would not operate. As if I didn’t know there was no cure. I left his office with no hope. Not only was Brett not responding to the DAN! protocol, he was regressing at this point. He still had all his language and skills, but had now developed a verbal stim of quacking and was touching his feet about every 2 seconds.

I cried for about two weeks and then I decided that I truly thought the surgeon was wrong and found the strength to seek a second and third opinion. So we are off to the doctors again.

We went to see a doctor at Columbia Presbyterian hospital in New York City. He told me that he has done this surgery on other children with developmental disabilities and has seen great success. After consulting with him, we decided to move forward and schedule the surgery. The next three weeks of waiting were treacherous and my house had never been cleaner.

The surgery was performed on 4/28/04. It is now exactly 6 months later. The surgery has changed my son’s life. Within 2 days of surgery, we began to notice changes. Prior to the surgery, Brett could speak, answer questions, initiate play and function with his NT peers. But now since his surgery, Brett is a changed child. His personality has blossomed, his language has exploded, his sleep issues are all gone, his stims and tantrums have disappeared, his OCD and anxiety are almost non-existent. While we still see some hyperactivity and some small issues, we feel that this was a miracle for us. The surgery truly was our answer to Brett’s autism. He continues to make daily improvements. He is no longer on any medication or supplements.

Since Brett’s surgery, I have met other parents whose autistic children have a chiari 1 malformation too. I have advised them to get 2nd and 3rd opinions and to see my doctor in NYC. My doctor at Columbia Presbyterian feels that this is not a coincidence. He feels that there may be much more to this and many children may have this malformation, but the proper tests are not being performed and no one is looking for this malformation.

My advice is to see a competent neurologist, get an MRI and get 2nd and 3rd opinions. My job is to communicate my story to as many parents as I can. My doctor is doing his job and is gathering data to publish. The published report will take one to two years, so until then, the doctors must be educated by you, the parent. I strongly encourage you to get the MRI and stay strong and steadfast.

I never thought that I could go down this long and windy road, but I made it….. and my son is the happiest I have ever seen him in his life. And now I am the happiest mother I could ever be!

Author Contact Information:
Author Mary Beth Palo
Email contact: marybeth@watchmelearn.com

For more information about Chiari 1 Malformations: http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Note from Lisa: I have known Mary Beth for at least a year. I have watched her struggle with issues with her son and recent discovery and treatment of Brett’s Chiari 1 Brain Malformation. This story is amazing – I asked her to write about it to share with others. Bottom line – the goal is to help other families with similar issues to find the right answers and to never give up hope. Please also note; I am not a Chiari 1 expert! Not every child with autism has this brain malformation! Please check with your doctor regarding next steps if you have any questions.


6. Fun Activities

South Coast Plaza FREE Carousel ride! WITH SANTA!!

Attention all TACA members! Diane Gallant has worked hard with South Coast Plaza management in arranging FREE CAROUSEL RIDES for children with Autism and their siblings!!
This special arrangement for Decembers carousel rides includes a visit with SANTA! Bring your digital camera and avoid the long lines to get a chance to see SANTA!
Come join us for a morning of fun and horse rides at South Coast Plaza!

Dates: Next date are: Saturday, 12/18
Times: 8:30am-9:30am (BEFORE the mall opens)
Local: South Coast Plaza by the carousel (NOT the Crystal Court carousel!)
Costs: FREE!!!!!!!!!
Park: Park by ZTejas Restaurant and the Bank of America ATM’s off Bristol
Note: Kids can ride as often as they would like and based on availability. Come join us for some free fun!!

NO NEED TO RSVP! JUST COME AND PLAY!!


7. Upcoming Fee-based Conferences & Seminars
in
Southern California

 

Parents of Special Needs Children Support Group

We welcome you to attend our group, which will provide education, support, and counseling.
This will be a small group setting with opportunity to share your experiences with other parents.

Contact group leaders:
Susan Gonzales, LCSW (310) 770-5009
Karen Cladis, MFT (714) 490-3780
New Group Beginning SOON! – Call for details
Fee: $50.00 per meeting
Time: Mondays 7:30 pm to 9:00 pm
Place: 19732 MacArthur Blvd, Suite 130 Irvine, Ca. 92612


TASK (Team of Advocates for Special Kids) has some great workshops on a variety of different topics in different locations.
Check them out at
all South County TASK Workshops are held at:
South O.C. Family Resource Center
28191 Marguerite Parkway, Suite 19, Mission Viejo.
Workshops are free!
Reservations are required - Call (714) 533-8275 to reserve your spot!


The ADHD-Autism Connection Tour Author Diane M. Kennedy offers real help for parents, professionals & individuals facing social, communication & behavioral conditions such as ADHD, ODD, Autism, Asperger's Syndrome & related conditions.

Date: Wednesday, Dec. 1, Los Angeles
Time: 8 am-4 pm.
Price: $135 professionals (3 or more $125 each); $100 parents & students
Location: Marriott LA Airport
Deb Newton adhdautismconnection.com
E-mail: webmaster@adhdautismconnection.com
Phone: 502-243-9110


8. A new school in Huntington Beach

Beacon Autism School

Innovative school in Huntington Beach for pre-adolescent and adolescent students now open for enrollment.
UPDATE: Only one opening is available for this school.

The mission of Beacon Autism School (BAS) is to enhance the student’s sense of independence, strength, motivation, and determination. Through their experience at BAS, students move toward a greater level of contribution to family and community.

Beacon Autism School is unique in that it:

  • works from a strong theoretical developmental base (Piaget)
  • employs a transdisciplinary team of therapeutic and educational specialists to assist each student in reaching their academic and social-emotional goals
  • individualizes a dynamic, creative curriculum using one-on-one and small group instruction
  • integrates vocational, social, and positive community interaction training throughout the curriculum
  • applies ongoing assessments and closely monitors student progress
  • understands the importance of frequent and meaningful communication with parents, referring schools, and the SELPA.

Minimum staff to student ratio is 1:3 with a maximum of 6 students per classroom.

BAS is dedicated to helping children with Autistic Spectrum Disorder achieve the best possible quality of life.

Please call Dr. Mary Lang at (949) 477-2144 or e-mail beaconautismschool@yahoo.com for more information.


9. Personal Note

This Halloween has passed with great fun and lots of trick or treating. Jeff (dressed as Dash from the Incredibles) sped around the neighborhood asking for treats from anyone who would answer the door. Not only did he enjoy the night immensely, he and dad were gone for hours enjoying the sights, sounds, and kids in costumes. And for those wanting to know – Jeff did not eat a bite of candy – not even when offered. But the funny thing – he slept with it and walked around the house with the bucket of goodies for days offering recounts of a great evening.

In preparation for the holidays – Jeff has already started creating his wish list for presents. His biggest desire? “Mom, please put up the Christmas tree!” So as soon as the turkey and stuffing is cleaned up and pilgrims are put away – we are planning to put up the tree and everything that goes with it.

In addition to the busy holiday season times – we are working on the next link in the Fast ForWord series. Jeff is already breezing through this program with continuing noticeable results in his auditory processing. For more information about Fast ForWord – please see www.scientificlearning.com or www.fastforword.com . During the holiday break, Jeff will be trying the Interactive Metronome as a follow up. I will keep you posted on how that goes.

An update on TACA: the six meeting coordinators and I are busily working on wrapping up the 2005 goals and budget. This budget includes working on fundraising for TACA’s on-going efforts. A lot of our preparation and planning includes the PARENT 2005 SURVEYS – please be sure you have filled one out and voiced your needs. You can obtain one of these forms at your next TACA meeting or if not, email me for a copy at contact us.

For a reminder on gift ideas, fundraising and holiday giving for this years festivities – please see the last TACA eNews PERSONAL NOTE HERE: http://www.tacanow.com/enewsletters_archive/October_2004_2.htm

Happy Thanksgiving to everyone next week and beyond!

Hugs, thanks, and be SAFE,
Lisa A Jeff's mom

And Editor: Kim Palmer (thanks Kim!)

Web Page for TACA Group: www.tacanow.com

check it out and let us know your thoughts

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA' s. TACA does not engage in lobbying or other political activities.

P.S. TACA e-news is now sent to 1,618 people!
(This number represents families – 95%, and the rest are professionals.)