Date:	Saturday, March 12, 2005
	Topic:	Autism Spectrum Disorders - School Shadowing and important Inclusion considerations. This topic to include what a good shadow looks like, how they integrate with your child’s classroom and help achieve objectives in the academic setting. Important information about inclusion considerations will also be reviewed.
	Presented by: Dr. Doreen Granpeesheh – CARD (Center for Autism and Related Disorders)
		http://www.centerforautism.com/ Dr. Doreen Granpeesheh, Founder and Executive Director of The Center for Autism and Related Disorders, has dedicated over 25 years to the study and treatment of Autism Spectrum Disorders. Through her research, curriculum development and treatment implementation Dr. Granpeesheh helped demonstrate the effectiveness of intensive, early Applied Behavior Analysis intervention. Dr. Granpeesheh earned her Ph.D. in Psychology from UCLA in 1990, and was licensed by the Medical Board of California in 1992. She is a Board Certified Behavior Analyst. In 1990, Dr. Granpeesheh founded The Center for Autism and Related Disorders, and through its fourteen offices she has helped thousands of children affected by Autism, Asperger’s Syndrome, and PDD-NOS. CARD services include assessments, supervision, parent/teacher training, and one-on-one behavioral therapy. Through Dr. Granpeesheh’s vision of helping as many individuals with autism as possible, CARD has become an industry leader in administering effective multi-disciplinary treatment plans.
	Time:	TACA meeting, 1:00 pm- 4:00 pm
	Fee:	Free – no RSVP required
	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.

TACA Has 7 Southern 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 - March 22, Kathleen Edwards --Special Ed Law - April 26, Charles Scott-- Special Needs Trusts - May 24, Dr. Devin Houston -- Enzyme Protocol for Autism Spectrum Disorders
4.	Corona:	3rd Saturday – Time: 1:30–4:30 p.m. - NEW LOCATION AS OF 2/1/2005 : Autism Behavior Consultants 1880 Town & Country Road Building B-101  Norco, CA 92860. Located off the 15 Freeway (Take 2 nd street or 6 th street exit) off Hamner. For more information, please contact us - March 19, Speaker- Lisa Ackerman, Executive Director, TACA, “Therapies that worked for my son” - April 16, Speaker - To be determined - May 21, Two Speakers: Jack H. Anthony, Special Ed Attorney, on Special Education Law & Your family - Author Christina Adams offers TACA members the first look at her new book A Real Boy: A True Story of Autism, Early Intervention and Recovery (Berkley/Penguin, May 2005). She discusses the struggles and joys of the recovery process, how her son passed a kindergarten-readiness test with no sign of autism detected, and how a new doctor refused to believe he’d ever been diagnosed. (see biography on Christina in section 2.)
5.	Torrance:	3rd Monday of each month at Whole Foods Market on PCH in Torrance Time: 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 - March 16 Kathryn Wage, MA CCC SLP, "Helping Your Child Develop Social Skills" - April 20 Mitchel Perlman, PhD, Clinical Forensic Psychologist, "Independent Neuro-psychological Evaluations" - May 19 Monique Bekeshus, MS, BIA Behaviorist and Program Director, "Classroom Competence" - June 15 Jennifer L. Hoffiz of the Sensory Center, "Sensory Integration"
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: Please contact Katie @ Swain Center email: SantaRosaTLC@swaincenter.com Phone: (707) 575-1468 Note: a vendor is offering their assistance until we locate a parent volunteer to take over the leadership position

Article A: Unprecedented NBC Coverage

What an incredible week on the coverage of Autism – the silent epidemic. (Please see Personal Note below for more information.) DON’T FRET IF YOU MISSED ANY OR ALL OF THE PAST WEEK’S COVERAGE!!! You can watch the NBC Coverage for FREE online or order the DVD for less than $5 (shipping and handling fees) – main web site: www.autismspeaks.org

Link to watch it online: http://www.autismspeaks.org/autism/menu/video.asp

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Article B: Treating the Body vs. the Mind

http://online.wsj.com/article_email/0,,SB110843279213754826-IVjfINolaR4n5ytaXyHaaqCm5,00.html

By RACHEL ZIMMERMAN Staff Reporter of THE WALL STREET JOURNAL

Many parents of autistic kids have long argued that something other than the disorder itself was causing some of their children's problems. Now, mainstream medicine is beginning to acknowledge that.

The idea, embraced by a growing number of top specialists, is to treat medical conditions that are common in autistic children. These problems -- which include gastrointestinal disturbances, sleep disorders and food allergies -- may be contributing to the children's behavioral difficulties. While such conditions are frequently treatable, they often go undetected due to lack of physician awareness and the children's poor language skills.

Major hospitals, from Massachusetts General to the Cleveland Clinic, have begun aggressively treating underlying medical problems in autistic children, and researching how these problems may be linked to the disorder's symptoms. The movement got a big push this month when six hospitals joined together to form the Autism Treatment Network, aimed at coordinating an approach to a wide range of potential physical problems.

When 10-year-old Becky Sullivan began biting holes in her wrists and hitting her own face so hard that it bruised, two psychiatrists and a neurologist told her mother the outbursts were behavioral problems caused by her autism. One suggested an antipsychotic medication, but that didn't stop the aggressive behavior.

HEALTH ISSUES AND AUTISM Chart: Behavioral problems in autistic children. RELATED ARTICLE •  A Radical Approach to Autism

Her mother then took Becky to Massachusetts General Hospital in Boston, where a pediatric gastroenterologist found that Becky's esophagus was severely inflamed and covered with ulcers. Her violent behavior likely resulted from frustration with her inability to communicate the excruciating pain, the doctor concluded. Acid-reflux medicines halted the problem almost immediately. "She's a whole different kid," says Becky's mother, Jacquelyn Sullivan of Quincy, Mass.

Autism is a broad term used to describe a spectrum of developmental disorders marked by language difficulties and emotional withdrawal. Currently, there is little agreement about what causes it, or why its incidence appears to have increased tenfold over the past decade. Desperate parents have often stumbled through a morass of conflicting medical and behavioral advice, from intravenous supplements to swimming with dolphins.

Guidelines for an Exam

The Autism Treatment Network, which recently began meeting, plans to draw up national guidelines for a thorough physical examination aimed at catching medical problems that appear to disproportionately affect autistic children. The hospitals plan to gather data on patients and publish findings on the prevalence of different medical disorders in autistic children. Centers participating in the network include Baylor College of Medicine, Houston; Cleveland Clinic Foundation, Cleveland; Columbia University Medical Center, New York; Massachusetts General Hospital, Boston; Oregon Health & Science University, Portland, Ore.; and the University of Washington Medical Center in Seattle.

"What we are trying to standardize is the concept that children with autism can and do have health-care issues just like typical kids and they deserve the same degree of attention, evaluation and treatment," says Margaret Bauman, a pediatric neurologist at Massachusetts General Hospital and a member of the committee that will oversee the new consortium.

One of the first priorities of researchers will be to settle -- through clinical study -- the hotly debated question of whether certain medical conditions, such as acid reflux, diarrhea and other gastrointestinal maladies, are more common in autistic children than in other kids.

For example, sleep deprivation, which can cause irritability and social difficulties in healthy people of all ages, appears at least at first blush to be more common in autistic children. One small study found that more than 66% of autistic children suffer from insomnia or other sleep disturbances, compared with only 30% of typical children, says Kyle Johnson, co-director of the pediatric sleep clinic at Oregon Health & Science University.

The autism network will soon begin collecting data on children and adolescents' sleep patterns. Researchers may also look for potential causes of the sleep problems, such as defects in the production of melatonin, a brain hormone that induces sleep, which preliminary work suggests may be produced at lower levels in autistic children. Some parents already treat their autistic children with over-the-counter supplements, but there's little proof they work.

Another area getting increased attention is food allergies. Scientists at Massachusetts General and across the country have begun looking for the reason that many autistic people appear unable to tolerate certain foods, such as wheat and dairy. Early research suggests the children have very "permeable guts," a term that means the intestines allow certain substances to cross into the bloodstream that would normally be blocked, says Timothy Buie, the gastroenterologist who treated Becky Sullivan.

One theory of how this relates to autism is that the small proteins of wheat and milk could bind to cell receptors in the brain and alter a child's mental state.

Richard Fade, a Medina, Wash., venture capitalist and parent of an autistic child who helped organize and raise funds for the new consortium, says he eliminated wheat and dairy from son Mitch's diet four years ago. The then-6-year-old's temper tantrums and anxiety decreased dramatically, and the unpleasant rashes on his body went away, his father says. The dietary change didn't cure his autism, diagnosed at age 2, notes Mr. Fade, but "there's a night-and-day difference in what he can do."

Another area the network will research is so-called metabolic disorders, where the body can't properly break down important biochemicals. One related problem that appears to affect a small percentage of autistic children is a malfunction in the mitochondria, small intra-cellular bodies that produce the energy needed to fuel the body, says Marvin Natowicz, a medical geneticist in the neurology department at the Cleveland Clinic. A mitochondrial malfunction could be responsible for the extreme exhaustion found in some autistic children, Dr. Natowicz says. It could also be somehow causing other symptoms as disparate as seizures, significant diarrhea and even constipation.

Supplements and Vitamins

Some physicians have tried giving high doses of certain vitamins such as B2, B1 and C, which are believed to aid aspects of mitochondrial function. Another approach is to give supplements such as antioxidants or carnitine, an amino-acid derivative, which scientists believe can neutralize the buildup of certain compounds if the mitochondria aren't working properly. The consortium plans to gather data on children with a series of tests to screen for chromosomal and metabolic disorders.

Until more is known, many doctors say parents with autistic children who are acting out should press their pediatricians to keep looking for possible medical causes -- and seek multiple opinions from specialists if necessary. "If the kid is being aggressive, self injurious, or otherwise exhibiting odd behavior or symptoms, parents should be unwilling to accept that as 'autism' behavior until proven otherwise," Dr. Buie says.

Write to Rachel Zimmerman at rachel.zimmerman@wsj.com

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Article C: LA TIMES For the autistic child, time matters
A diagnosis at age 2 -- or even earlier -- could make a difference.

By Shari Roan http://www.latimes.com/features/health/la-he-autism14feb14,0,5650029.story

Dr. PAULINE FILIPEK sizes up her tiny patient in her toy-strewn clinic in Orange. As the 22-month-old boy enters the room, he doesn't look at Filipek or anyone else. He plows into a pile of toys on the floor, sometimes walking or crawling over them, but doesn't speak.
He could easily pass as a good-natured child who needs little attention. But Filipek, a neurologist, sees something else, behaviors "that make the hair on the back of my neck stand up." Most toddlers will carry a toy in only one hand — this child clutched a toy in each fist when entering the room. And children this age typically will scope out a room full of strangers warily, sticking close to Mom or Dad for reassurance.
The scene is familiar to Filipek. At the end of a 90-minute exam she tells the child's parents that their son has autism. Filipek pulls her chair close to the couple, first-time parents in their 30s, and leans toward them before she continues. "The fact that you're here with him, this young, is wonderful."
It is balm intended to soothe the harsh news. And Filipek's encouragement is sincere. She is among a growing number of child development experts who say that autism often can be identified much younger than is typically done today, and that early treatment can alter, sometimes dramatically, the course of the brain disease that affects about one in 500 U.S. children.
Geraldine Dawson, director of the Autism Center at the University of Washington's Center on Human Development and Disability, says doctors now can reliably diagnose autism by age 2 and researchers are developing screening tools to identify kids as young as 18 months. "The long-range goal," she says, "is to be able to detect autism at birth or in very early infancy."

Cases on the rise
Early recognition is one of the most hopeful developments in the sobering world of autism, a neurological disorder in which people have difficulty communicating and interacting socially with others. Autistic children often speak little, ignore others and display repetitive behavior, such as spinning in circles or focusing on one object for hours. They may excel at something in detail, such as spelling or playing a musical instrument, but become overwhelmed when trying to navigate the world at large. The disorder is also known as "autism spectrum disorder," reflecting the wide range in severity of cases and the various subtypes of autism, such as Asperger's disorder and pervasive developmental disorder.
In California, an estimated one in 322 children has been diagnosed with autism, according to the state Department of Development Services. According to its 2002 report, autism cases increased 273% from 1987 to 1998. Between 600 and 800 children with autism are added to the DDS's service rolls every three months. No one knows what causes autism or why more children are developing it.
Many doctors see the effort to diagnose autism earlier as a significant development that could yield clues to what causes autism and how best to treat it.
But the trend in early diagnosis has also created a backlog of parents who are demanding diagnostic evaluations earlier — often for babies. Doctors and insurers frequently deny these services for several reasons: Evaluations are costly, there is a lack of trained therapists and some healthcare providers say that autism can't reliably be identified before age 3 or 4.
"It's like there are two camps. You have some doctors — the few — who are comfortable diagnosing children at the age of 1," says Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore. "And you have others who feel strongly that you can't diagnose before age 3. They won't even talk about it. Research on early diagnosis is coming off the press as we speak; it's that recent. People are just starting to list what the red flags are in infants and toddlers."
Those lists are beginning to make their way into the hands of parents and pediatricians. Later this month, the national Centers for Disease Control and Prevention will launch a campaign to promote earlier diagnosis of autism. A lack of nonverbal communication could be one of the first signs that a child isn't developing normally, experts say.
At about 8 months, Dawson says, babies should babble and pay attention when their names are called. By 12 to 14 months, they should point, wave, gesture, imitate others and play peek-a-boo.
"This is the age when the child points at something and looks at the mother to see if she sees it," she says. "They show things to their parents. Even before kids are using formal words, they are using their bodies for pointing and showing. This is important because with a child with autism both the verbal and nonverbal systems are affected."
Although these behaviors are subtle, they are proving to be fairly reliable diagnostic tools. In a 1994 study, Dawson and colleagues examined videotapes of the birthday parties of year-old children later diagnosed as autistic and compared them with videos of normal children. Researchers watched for four behaviors: looking at others, gesturing and pointing, showing things, and responding when their names were called. They weren't told which children were later diagnosed as autistic. Nevertheless, they were able to correctly identify 10 out of 11 normal children and 10 out of 11 autistic children.
Other potential signs of the disorder can emerge between the first and second birthdays, experts say. While most toddlers will be speaking at least a few words by 14 to 18 months, autistic children often do not. Delayed language development may not by itself indicate that a child is autistic, but a delay combined with other autism symptoms is reason for concern, doctors say.
Also, an estimated 20% of children with autism appear to develop normal speech, but then begin to regress, no longer speaking words they once spoke, growing silent, shunning others, becoming isolated.
Doctors can only identify symptoms that may indicate autism in very young children, says Filipek, noting that the earlier the diagnosis is made, the greater the chance of misdiagnosing a child. Still many experts say they feel it's better to recognize any developmental delay and address it as early as possible, no matter what the disability is labeled.

Acting on instinct
While doctors look for specific developmental signposts, many parents are relying on their own awareness of rising autism rates and a "gut feeling" to bring their children in for evaluations at younger ages than ever before.
Cindy Bluth had read about autism in women's magazines and knew enough about the disorder to begin worrying when her daughter, Juliette, was 7 months old. Cindy had three older children when she married her husband, Jon, in 2000.
"I know a little bit about babies," says Bluth, picking up scattered toys in the family room of her San Clemente home one recent morning. "I realized that Juliette never really looked at Jon and that my face should be her favorite 'toy,' but she did not want to look at me." Juliette was also not babbling.
When her daughter was 10 months old, Bluth called the pediatrician — telling herself she was being silly. "You don't want to be this parent who thinks everything is wrong all the time." But the pediatrician agreed that Juliette's silence and avoidance of eye contact was unusual and said he wanted to see the baby again in two months. By then, Juliette was walking on her toes (a characteristic of autism) and spent hours engrossed in the same Disney videotape.
For Bluth, the clincher came one day when she sat in the park and watched as Juliette sifted through gravel for 40 minutes, engrossed. "I decided then I wasn't going to sleep another night without finding out what was wrong," she says.
Juliette was diagnosed with autism at UC San Diego shortly after her first birthday.
In her clinic near UC Irvine Medical Center, Filipek says most early diagnoses result from parents' concerns, not pediatricians' referrals. In one 1997 study of 1,300 families, children were diagnosed with autism, on average, at age 6. However, many of the parents had sensed something was wrong when their children were about 18 months old, and they had sought medical assistance, on average, by age 2.
"Parents say, 'I have known something is wrong since they were 12 months old, and I've been from physician to physician to physician and they always say not to worry,' " Filipek says. "If you think something isn't right, 85% of the time you are on the money as a parent."
The CDC's new campaign aims to educate pediatricians about symptoms while urging parents to reject "wait and see" advice from a doctor.
"I think doctors are afraid of misdiagnosing this," says Bluth, who credits her pediatrician for listening to her early concerns. "The benefits of starting therapy early are so great. How is it going to hurt them to be evaluated? A misdiagnosis wouldn't be the end of the world."

An intervention backlog
The controversy over early diagnosis can create obstacles after a child has been identified as autistic. Brodie and Karen Sadahiro's daughter, Grace, 3, was diagnosed with autism by UCLA physicians at 26 months. Despite a 14-page diagnostic report from UCLA, doctors at a local treatment clinic — which contracts with the state to provide free or low-cost services — rejected the family's request for therapy, saying autism cannot be diagnosed before age 3.
After filing two lawsuits and threatening a third, the Sadahiros obtained an autism diagnosis and services for Grace late last year. "Most of us do not have enough money to fund our own therapy," Karen Sadahiro says. "So we have to wait until after age 3. What is the point of early diagnosis if you can't get early intervention?"
Many autism treatment centers are set up to deliver therapy to preschool and older kids only, Landa says. While more doctors are making early diagnoses, she says, "the centers aren't prepared for it. The money isn't there."
Although there is little research to support its usefulness, most autism experts say that intensive therapy — which usually includes 20 or more hours a week of behavioral, speech, physical and occupational therapies — can improve a child's functioning. The earlier such therapy begins, the better, they say. Kids with autism must be taught what comes naturally to other children.
"We don't know yet whether early intervention will give us more of an advantage," says Filipek. "But autism is like a deprivation experience. We feel that if we can stimulate, very early in life, those areas of the brain that are emerging and developing, we can change the course of development."
Early, aggressive interventions have already disproved some notions about the disorder, says Catherine Lord, director of the University of Michigan Autism & Communication Disorders Center.
For example, doctors used to believe that about half of all autistic people couldn't talk. But in Lord's sample of children diagnosed at age 2 and undergoing therapy, only 14% were still nonverbal by age 9 and about 35% to 45% could speak fluently.
Lord contends that many children who are diagnosed young and receive three to four years of intensive therapy can enter regular elementary schools and function independently. Her long-term study following children diagnosed at 2 found that about 5% no longer have autistic symptoms at age 9, while an additional 20% have some symptoms but can attend regular schools. The remainder improve but continue to have difficulties.
Children who undergo intensive therapy can sometimes progress so well that they appear normal by preschool age and are denied further services. The responsibility for providing therapy to developmentally delayed children typically switches from regional centers to public school districts at age 3.
Diagnosed as autistic shortly after his first birthday, Kai Viruleg underwent extensive therapy and was able to converse, look at strangers and enter preschool by his third birthday last September. But because he no longer exhibited autistic behaviors, the school district denied Kai access to several of his previous therapies. His mother, Jennifer Damian, had to fight to restore his services, hiring a lawyer at one point. Meanwhile, some of Kai's autistic behavior reemerged.
"It has taken me about three months to line up new services, and he has lost a lot of ground," says Damian, of Northridge. "Regression comes very quickly. It only takes a week of missed therapies."
Damian's determination — she quit her job to become his full-time advocate — has given Kai a chance he may not have had. Most days, Damian shuttles her son to therapy appointments, doctors' visits and school from 8 a.m. to 8 p.m. After almost two years of intense intervention he is on track to enter a normal elementary school.
"I remember the day he was diagnosed, after I finished bawling I said, 'I'm going to cure him of his autism,' " Damian recalls. "Well, autism is not a curable disorder. But he would have been severely autistic at this point if we had done nothing."

Behaviors to watch
The criteria used to diagnose autism are designed for 3-year-olds. Recent research shows certain behaviors in younger children may indicate a higher risk for developing the disorder. No single factor indicates a child may have autism; the presence of several symptoms could be cause for concern.

Possible symptoms at 6 months:
•  Not making eye contact with parents during interaction
•  Not cooing or babbling
•  Not smiling when parents smile
•  Not participating in vocal turn-taking (baby makes a sound, adult makes a sound, and so forth)
•  Not responding to peek-a-boo game

At 14 months:
•  No attempts to speak
•  Not pointing, waving or grasping
•  No response when name is called
•  Indifferent to others
•  Repetitive body motions such as rocking or hand flapping
•  Fixation on a single object
•  Oversensitivity to textures, smells, sounds
•  Strong resistance to change in routine
•  Any loss of language

At 24 months:
•  Does not initiate two-word phrases (that is, doesn't just echo words)
•  Any loss of words or developmental skill
Source: Rebecca Landa, Center for Autism and Related Disorders at the Kennedy Krieger Institute, Baltimore

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Article D: Newsweek Coverage on Autism

Newsweek Cover on Autism www.newscom.com/cgi-bin/ prnh/20050220/NYSU006

NEWSWEEK COVER: 'The New Age of Autism' Scientists Hope to Identify Early Markers of Autism in Babies as Young as Six Months

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Article E: Is autism in the genes? Or the environment?

Researchers and families work together to try and get to the root of this developmental disorder
Today show

What causes autism? While the condition is not new, doctors and scientists are unsure of its exact causes. Scientists say genes may play a role, although no single gene or genes have been discovered to definitively cause autism so far. Others blame the child's pre- and post-natal environment. "Today" host Matt Lauer reports.

Three-year-old Xavier Trent has autism.  He and his entire family—mother Kimberly, father Mark and brother Jordan—are at the Vanderbilt Kennedy Center in Tennessee to give samples of their blood.  They are involved in a study of DNA that will hopefully give scientists clues to unlock the secrets of autism.

“There may be a gene or a series of genes that may cause autism,” said Kim Trent.

In fact, experts say five to twenty genes may be responsible for causing autism.

“I think it's very clear genes are involved in making you prone to autism, maybe even causing autism,” said Dr. Gary Goldstein, a child neurologist who directs the Kennedy Krieger Institute in Maryland. “What we don't know is just how many and which ones.”

Discovering the genes for autism could lead to earlier diagnosis, intervention and perhaps drugs to treat the disorder. But with the reported increase in cases of autism, some believe something else in addition to genes may be causing the condition.

”There's really the role for something in the environment could be triggering someone who is genetically susceptible,” said Goldstein.

“I think there's a real concern that there's been a change in our environment,” said Dr. Carol Berkowitz, president of the American Academy of Pediatrics. “An exposure to some toxins, chemicals environmental factors either when a mother is pregnant or after the delivery of the child that has led to autism.”

Possible exposures include pesticides, flame retardants and even pre- and post- natal viruses.

One possible factor still remains controversial. Though health officials insist that childhood vaccines are safe, some believe that exposure to the mercury preservative once found in most childhood vaccines can cause autism.

“He was not developing and he became worse and worse,” said Lynne Avram, who thinks the mercury preservative, thimerosal, may have caused her son, Paul, to develop autism.

• The number of U.S. children diagnosed with autism has skyrocketed in the past decade. As families struggle to cope with the disorder, MSNBC and NBC News look at the issues surrounding autism, the theories behind the increase and the latest treatments. Click here for more.

“I think the trigger for him was the cumulative mercury burden from his vaccines, because his body was not able to get rid of the mercury like you and me.”

Dr. Kenneth Bock believes that autism can be effectively treated through special diets, nutritional supplements and removal of toxins.  Bock tested Paul's urine and found elevated mercury levels.

“He had elevated levels of not only mercury but cadmium, lead, arsenic and tin,” said Bock. “There may be a subset of children that are more susceptible to mercury and therefore react this way in terms of the autism spectrum.”

Bock detoxified Paul's body of heavy metals through chelation therapy.  He used an FDA approved medicine, called DMSA, which has been used for decades to treat lead poisoning. It has the potential for side effects like liver problems, but Bock says the drug has a good safety profile.

“After two years after he started treatment, he would look at me and say, ‘Momma I love you,’” said Avram, who lives in Cheshire, Conn.

Bock also treated Paul with glutathione, a protein that detoxifies the body of heavy metals.

But the Institute of Medicine which looked at the link between autism and childhood vaccines has found no "causal relationship."

“My response to the parent who's truly convinced and can't be swayed is that there's not much that you can say to them, other than the evidence does not support their point of view. But even trying to remove mercury does not improve the outcomes of these children,” said Dr. Marie McCormick of the Harvard School of Public Health.

The Institute of Medicine also found no published clinical studies showing that chelation works.

“The use of chelation in children with autism is a totally unproven therapy,” said McCormick. “And chelation is not a procedure without side affects in some individuals.”

The CDC says that childhood vaccines are, and have always been, safe.

“Right now, the scientific evidence doesn't provide any framework for concluding that thimerosal or immunizations in any way affect autism,” said Julie Gerberding, director of the CDC. “But we have to have an open mind about that.”

Others point out that if the mercury in vaccines was the culprit, the rate of autism would have started to decline after 1999.  That year, health authorities urged manufacturers to remove thimerosal from all childhood vaccines except the flu shot -- in order to make sure parents would vaccinate their children.

“If indeed, the thimerosal, which is no longer there, was provoking this epidemic of diagnosis of autism then we ought to see a marked decrease in the number of children we diagnosed with autism. To date that is not happening,” said Goldstein.

Journalist David Kirby is author of a new book called "Evidence of Harm," which examines whether the mercury in the preservative of vaccines can cause autism.

“I think there is a body of evidence that actually dovetails quite nicely into a workable, plausible theory,” said Kirby. “That's still is far from proof.  We need to get to the bottom of this.”

Others say autism may be caused by the body's response to a particular injury or inflammation.

“There may be an immunologic component like we've seen people who have arthritis and other inflammatory diseases.  And I think that mechanism could well be something worth exploring in what's going on in autism,” said Goldstein.

Still, others say it might be diet.  Barbara Guterman believes the tuna fish she ate while pregnant caused both of her sons, Blake and Brett, to develop autism.

“I ate a can of tuna fish every single day thinking I was eating a healthy protein source,” said Guterman.

In fact health officials recommend that pregnant and nursing women consume no more than 12 ounces of fish per week.  Experts also warn pregnant women against extreme dieting.

Given all these possibilities and no answers, most agree more studies are needed.

“We need more people, more scientists in every area, to be aware of autism, and if the funding were there we would find many, many more scientists working in this,” said Goldstein. “Do we need it? Absolutely, because we don't have the answer.”

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Article F: Parents push for Autism Cure

http://msnbc.msn.com/id/7012176/print/1/displaymode/1098/

Doctors credit parents for making research a priority

By Robert Bazell

LOS ANGELES - Portia Iverson and Jon Shestack learned their first child, Dov, had severe autism in 1995, when he was almost three years old.

"I just remember sitting by his crib and just crying and crying," says Portia. "He was slipping away, every minute."

Like all parents, they wanted to know what to do.

"So, we said, 'OK. What's there in medicine?' There wasn't anything in medicine," recalls Jon. "And then we said, 'Well, they must be doing research.' But there was no ‘They.' There just wasn't."

Autism had long been neglected. So Portia, an accomplished set designer, and Jon, a successful movie producer, formed a parents' organization called Cure Autism Now.

When NBC News first visited them in 1999, they were lobbying Congress for money and attention. But more important, Jon and Portia were learning the scientific details so parents could push the research.

Today the organization can share credit for a new blood bank where researchers look for genes that might cause autism. Scientists say the group has brought increasing focus to autism in many labs.

"It has directly changed the scene of autism research in the United States," says Dr. Michael Merzenich at the University California, San Francisco.

"I've never seen more effective parent involvement in any disorder," agrees Dr. Daniel Geschwind, a genetics researcher at the University of California, Los Angeles.

How does it feel for Jon and Portia to know they can move science and politics like that?

"People told us in the beginning you can't hurry science," laughs Portia. "Well, you can. You really can. You can treat it like a low-budget movie and make it go fast. And that's what we've done."

But of course it is never fast enough. Dov, now 13, remains profoundly affected. And while autism is getting more attention, it still receives far less money than any disorder that affects as many people.

So is Cure Autism Now an ambitious name for their organization?

"It will always be [a] real good idea until it is done," says Jon. "And then when it's done, we'll be happy to retire the name."

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Article G: New Treatments to Fight Autism?

http://www.eastvalleytribune.com/index.php?sty=36797 News Update

Sean Reedy, 7, of Scottsdale, is receiving chelation therapy to reduce metals in his body in the hope that it lessens the symptoms of autism. Paul O'Neill Tribune

By Jennifer Ryan, Tribune

Roxanne Reedy never thought her son would look at her again. Since autism began taking Sean Reedy away from her at age 1, halting speech and many normal behaviors, Roxanne said she never expected an end to his pacing and screaming, his smearing of feces in their Scottsdale home or his episodes in the corner, dragging his head against the wall.

Then Sean, now 7, began treatment 3 1 /2 years ago to remove heavy metals from his body, a process called chelation therapy. Within days, Roxanne said his tantrums stopped, he played with toys instead of hiding in a corner and once again, he was looking at his mother. "We are just so thrilled and so hopeful," Roxanne said. "How can a kid go from screaming in a corner to wanting to play tag, using words and looking at us again? It was amazing." Such stories of dramatic turnarounds in autistic children have fueled the use of chelation, a controversial therapy that has sharply divided the traditional and alternative medical communities, as well as different families coping with the devastating impact autism has on their children. "When you have someone in the medical community tell you to love (your autistic child) and prepare to institutionalize him, you have to look somewhere else or give up hope," said Cynthia Macluskie, who had her autistic son begin alternative therapies including chelation after he showed no improvement from traditional behavioral therapies. "No matter what’s going on, you have to find answers, and if the traditional medical community can’t give them to you, you have to look somewhere else." But it is unclear if the answers to treating autism lie in chelation therapy. Some researchers and medical doctors said there have not been enough studies of chelation to determine if the therapy works in autistic patients, or if it is safe. The therapy strips toxic and essential metals from the body, requiring close monitoring and supplements to restore needed metals like zinc and copper. "It is still an unproven treatment. . . . We have to be careful," said Dr. Raun Melmed, a Scottsdale developmental pediatrician and medical director of the Southwest Autism Research and Resource Center. "The risks are really unknown because (chelation) has never been studied in a systematic fashion," he said. With Arizona State University’s support, James Adams, an engineering professor, is trying to answer the unknowns about chelation with a study he plans to begin in the next few weeks, which will test whether the off-label use of the chelating agent DMSA, a chemical compound approved by the U.S. Food and Drug Administration for lead poisoning treatment, benefits autistic children. "This will be the first treatment study ever done with this medication," Adams said. "Once completed, it will be ground-breaking." MERCURY FACTOR Adams said that if his study finds that chelation using DMSA reduces or perhaps erases the debilitating affects of autism in children, the results — if accepted and replicated in the scientific community — could prove that mercury plays a significant role in autism. Autism’s cause remains unknown and there is no cure. An estimated one in every 166 children is affected by autism, cases of which are being diagnosed 10 percent to 17 percent more each year, according to the U.S. Department of Education and other federal agencies. The disorder is marked by a wide range of symptoms that can include lifelong difficulties with communication, social interaction, sensory sensitivities and repetitive behaviors. Researchers suspect that autism is influenced by both genetic and environmental factors. Some children, they believe, are genetically predisposed to autism, which could be triggered by something they are exposed to in their environment. In the autistic community, some people believe that trigger is mercury from dental fillings, certain types of seafood and especially childhood vaccinations — which until several years ago contained mercury from the preservative thimerosal. They point to symptoms of mercury toxicity that resemble those of autism, including sensory, neurological, immune, motor and behavioral dysfunctions. They also point to the timing of autism’s onset, usually within the first few years of life, when vaccinations are given. Heather Butcher of Mesa said she can see in her son’s baby pictures the sudden change that occurred when autism began to appear at about 15 months old. Before that time, the camera captured Joshua brighteyed, laughing and interested in other people. Then suddenly, all the photos show a boy distant from other people, with eyes glazed over. "I do suspect (vaccines) are what contributed to Joshua’s autism," she said. "If it didn’t cause it, it was a trigger or a catalyst." But the results of epidemiological studies on mercury, vaccinations and autism are mixed, and medical providers said there is no strong scientific evidence linking vaccines, whether they contain mercury or not, to autism. Support for therapies to remove mercury from autistic children comes primarily from anecdotal evidence, which does not prove chelation’s efficacy or safety, Melmed said. Butcher said that despite her beliefs about vaccinations and autism, she is reluctant to put her son through chelation therapy until there is more research proving it is worthwhile. "We had considered it, but I am worried about safety, honestly," she said. "When I read about it, I wasn’t sure the benefits outweighed the risks. Up to this point, it’s all been anecdotal." Several years ago, medical providers learned a lesson from secretin, an injected hormone that parents said was improving the lives of their autistic children. When the medication was tested, however, researchers could not find enough scientific proof of its effectiveness to recommend secretin as a treatment, Melmed said. More research is needed into chelation therapy, said Melmed, whose practice includes a significant number of autistic children. Although he does not recommend chelation to his patients, many of them are undergoing the therapy, and don’t seem to have the wonderful results that other parents talk about, he said. "It’s one example of the many possible treatments for autism, and certainly we need to keep looking because it’s a devastating disease. Parents are desperate," Melmed said. "Many children are receiving (chelation) and we owe it to them to determine its safety, its efficacy and whether it should be used," he said. PERSONAL MOTIVATION Adams said his inspiration for research into mercury and autism is his autistic daughter, Kim. By age 5, she was nonverbal. Now 12 years old and in the sixth grade, Kim has made considerable progress, although she functions at a third-grade level. Kim received chelation, but its impact on her autism was limited, Adams said, because she didn’t start until she was age 9, when the treatment was becoming better known. "It’s my daughter’s condition that drives me in what I do," he said. Because better results have been reported when children start chelation at a younger age, Adams said his threemonth study will involve children ages 3 to 9. ASU’s institutional review board for human subjects has approved the double-blind trial, he said. Next week, Adams will begin recruiting 80 autistic children, half of whom will receive DMSA, the other half a placebo. To address safety concerns that chelation strips the body of not only toxic metals, but essential metals, participants will be required to take a vitamin supplement, Adams said. Participants also will be monitored for decreases in liver function and blood cells, a risk reported in 1 percent to 2 percent of patients who stayed on DMSA for 19 days straight, he said. Once taken off the compound, the patients’ liver and blood cell readings returned to normal. This study, however, will keep children on DMSA for three-day intervals separated by 11 days off the medication, Adams said. Children will be evaluated before and after their treatment by parents, teachers and in a one-hour assessment between the child and a clinician who will use the Autism Diagnostic Observation Schedule, the medical community’s gold standard in assessing the severity of autism, Adams said. A comparison of the evaluations, combined with urine tests of excreted mercury, should tell researchers what impact DMSA may be having on the children’s autism, he said. Adams, a professor of chemical and materials engineering, has been criticized for lacking a medical and clinical background for autism studies — a criticism he freely accepts, but is working to overcome with the help of medical research professionals. "I would love it if people more qualified than me would do these studies," he said. "I’m just an engineer who sees a huge question out there."

Contact Jennifer Ryan by email, or phone (480) 898-6535

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Article H: Are We Giving Children All They Need? As numbers increase, autism treatment falls short.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2005/02/22/EDG27BDUTH1.DTL&type=health

Rachel Powell Norton

The news earlier this month that autism cases in California had increased by 13 percent in 2004 and more than fivefold in the past decade was met with a mixture of sadness and grim satisfaction among families of children with autism. Of course, no one wants to see another person's child afflicted with this mysterious disorder, which affects social, communication and intellectual development in fundamental and lifelong ways. Still, the numbers confirm what people touched by autism already know: Autism cases are skyrocketing, and the sooner our policymakers turn their attention to this public health crisis, the better off everyone's children will be.

While the causes of autism still elude researchers, there are a number of helpful therapies and educational methods that can help children with autism progress both academically and socially. For example, behavioral therapy (often referred to as applied behavior analysis, or ABA) has been widely cited by parents and researchers as bringing about modest and sometimes dramatic improvements in a child's behavior and overall communication skills. Most clinicians who see young children at risk for autism would recommend immediate speech and occupational therapy to address underlying communication and sensory disorders, and probably some form of play therapy to improve the quality of the child's connections with others. Many autism experts would also recommend at least 20 hours per week of one-on-one behavioral therapy (the ABA model) that breaks down needed skills and teaches them one tiny piece at a time.

It sounds relatively straightforward: Accepted therapies can improve -- often significantly -- the child's functioning and quality of life, and we know that the earlier these therapies are begun, the better a child's prospects are. But autism is a challenging disorder: there is no one-size-fits- all intervention plan, and parents of newly diagnosed children often lose valuable time simply identifying the right therapists and educational programs and then waiting for a spot to open up.

Cost is a significant problem as well, since health insurance doesn't always cover many of the treatments listed above, or it applies stringent criteria to tightly limit or even deny outright any treatment for autism. Some parents report that one highly regarded California HMO appears to have adopted a strategy of "deny, deny, deny," forcing subscribers to appeal repeatedly to the state's Department of Managed Care to secure even universally recommended therapies like speech.

Health insurers aren't the only problem. Local school districts are required by federal law to offer a free, appropriate public education to every child, regardless of disability. But a parent's definition of "appropriate" may differ greatly from the local special-education administrator, who must balance need with ever-shrinking educational budgets. Though districts are barred by law from considering cost when creating an educational plan for an individual student, special educators readily acknowledge that California's dire budget situation is clearly affecting the comprehensiveness of the programs they can offer autistic students.

Sometimes, the situation becomes truly nightmarish. Insurers have argued that autism treatment is an "educational issue" and simply referred subscribers to the local school district, which in turn offers options the parents find inadequate. Ultimately, many families find themselves in the untenable position of putting off treatment they think will be beneficial, simply because they can't afford to pay for it out of pocket, and they can't persuade their insurer or their school district to provide it without a long and costly legal battle.

A year ago, the eldest grandson of Bob Wright, chairman and CEO of NBC, was diagnosed with autism. As a result, Wright has galvanized NBC News to provide unprecedented autism coverage this month. This is a laudable public service, but what parents desperately trying to get treatment for their autistic children want to know is: Will this reporting extravaganza finally convince my insurance company to stop denying my child's claims for therapy? Will it get my school district to offer better options for placement and more support for my child in the classroom?

Sadly, the Centers for Disease Control and Prevention reports that autism is now the fastest-growing developmental disability, affecting an estimated 1 in 160 children nationwide. A decade ago, 1 in 2,500 was thought to be affected with autism. The good news, if there is any, is that autism and related disorders like Asperger's Syndrome are treatable, if not curable.

How much larger will the numbers have to grow before insurers, educators and policy-makers do the right thing and make it easier for families to access and afford promising therapies and effective educational programs? The alternative is that a generation of autistic children will miss out on a chance at satisfying, productive adult lives because they did not receive enough help early in childhood.

Rachel Powell Norton is a San Francisco journalist working on a book about families coping with autism.

Article A: Wall St. Journal on Chelation and Autism

[By Amy Dockser Marcus for The Wall Street Journal.]  

One of the most frustrating struggles in children's medicine has been the long-running, and often controversial, effort to treat autism.

Now, some parents and physicians are touting an approach that could be the most controversial yet: using drugs that strip the body of metals. The treatment, called chelation therapy, has been used for decades to detoxify people contaminated with metals through industrial accidents or environmental exposure. The drugs have potentially serious side effects -- including bone-marrow and liver problems -- because they also strip necessary minerals such as iron and zinc from the body.

But advocates of the technique say the drugs can significantly reduce autism's devastating symptoms such as lack of emotion and repetitive behaviors. Some go so far as to say that autistic children treated with chelation can return to normal health.  

Chelation Agents

The practice grew out of the belief among many autism experts that heavy metals -- especially mercury-based preservatives in childhood vaccines -- are to blame for autism. An Institute of Medicine report in May 2004 found no link between autism and vaccines. But the theory got a boost last year after a toxicologist who treated his own son with a chelating medication testified before a congressional subcommittee chaired by Congressman Dan Burton of Indiana.

Rashid A. Buttar told the committee that 19 of the 31 patients in his North Carolina clinic using the medication, called TD-DMPS, for more than a year had a complete loss of their autistic symptoms. The results haven't been published, though Dr. Buttar says he is working toward that.

The practice of chelation as a treatment for autism has been greeted with anger by many in the mainstream medical establishment, who decry the potential side effects and note that there are no published clinical trials demonstrating that it works. Some contend that children who seem to improve after therapy were likely misdiagnosed as autistic to begin with, or simply have a milder form of autism.

Many autistic children who have been treated with chelation were undergoing numerous other treatments as well, including in Dr. Buttar's research. That makes it “difficult to tease out the effect of chelation,” says Marie McCormick, professor of maternal and children's health at the Harvard School of Public Health. Only clinical trials are likely to resolve the debate, adds Dr. McCormick, chairwoman of the committee that wrote last year's IOM report on vaccines.

The traditional approach to treating autism has focused on intensive behavioral therapy, special education and speech training. Autism, which affects as many as one of every 166 U.S. children, according to the Centers for Disease Control and Prevention, is a developmental disorder that affects a child's communication, creative play and social interaction.

There is no way to know how many autistic children are undergoing chelation. The CDC reported last year that 60,000 Americans use some form of chelation therapy. But it isn't known how many are being treated for lead poisoning or other diagnoses. Representatives for the CDC and the federal Food and Drug Administration said they had no comment on the use of chelation therapy for autism.  

Word-of-Mouth
Thus parents embarking on chelation are relying primarily on anecdotal reports through the Internet and other word-of-mouth avenues. The story of Lenny Hoover, 6 years old, from Royal Palm Beach, Fla., is one that advocates of chelation therapy often cite.

Lenny Hoover's parents say chelation helped reverse his autism. He now attends regular kindergarten. Charles Hoover, Lenny's father, says his son was diagnosed with mild to moderate autism at the age of 2. The Hoovers first put Lenny on a wheat- and dairy-free diet, in the hope this would reduce his gastrointestinal problems, which are a common issue for autistic patients. They started him on intensive behavioral therapy. When he was 28 months, they also began chelating him after tests showed Lenny had elevated tin, nickel and arsenic in his urine. They mixed a medicine called DMSA into his juice, which he had to drink every eight hours for three days, with 11 days off. He did 38 rounds of chelation following this schedule.

“We had a heck of a time getting him to drink it,” said Mr. Hoover. “It smells like sulfur and is horrendous.” But Lenny started making such rapid gains that they eventually stopped behavioral therapy. By the time Lenny was 5, the local school determined that he had no developmental delays. He started a regular kindergarten last fall. Says Mr. Hoover, “We lost our son, then we got him back.”

A number of Web sites and autism support groups offer information to parents on chelation. A Yahoo chat group about chelation and other biomedical treatments for autism, Chelatingkids2, has more than 1,800 subscribers, according to co-founder Ann Brasher. The Autism Research Institute, an advocacy group in San Diego that supports the idea that vaccines are the primary source of mercury poisoning in autistic kids, says that in its most recent parent survey, 73% of the 187 parents who said they use chelation therapy reported that it was helpful. Today, the institute, which says it is funded mainly by individual contributions, is set to release a report recommending chelation as “one of the most beneficial treatments for autism and related disorders.”  

Question of Diagnosis
Some critics argue that patients such as Lenny Hoover may have been misdiagnosed -- that such children were actually at the high- functioning end of the spectrum of autistic disorders or were never even autistic. Mr. Hoover says that Lenny demonstrated typical autistic behavior. Lenny had lost his speech ability, slept only a few hours at night, and in home videos he is seen spinning around in a circle, over and over again. Mr. Hoover acknowledges that it is difficult to say conclusively which of the therapies used on Lenny was helpful. He says that the diet, behavioral therapy and chelation all helped his son, but that he believes chelation was a key. At this point, Lenny eats a regular diet and hasn't done any chelation since July 2003, when his parents decided he wasn't making further gains from the therapy.  

Off-Label Use
There are many medications used for chelation. Some, such as DMSA – a chemical compound made by a variety of manufacturers including Epochem Co. in Shanghai -- are FDA-approved for other treatments including lead poisoning. Doctors who prescribe these to treat autism are using them off-label, which is allowed for already-approved medications. Others aren't FDA-approved. But pharmacists can compound them for individual use at a physician's request. The drugs can be given in several ways, as creams, pills or via shots or intravenous infusions. Regimens vary in frequency, dosage and length of treatment.

Before starting chelation, patients undergo testing to measure their exposure to heavy metals. Doctors disagree on the best way of testing metal exposure. Options include hair, urine and blood tests. Critics say these tests can have high false-positive rates. The Autism Research Institute supports the use of a so-called provocation test, which involves giving a chelating agent followed by urine or stool collection to see whether heavy metals were excreted.

Chelation therapy isn't cheap, with medications running $100 to $200 a month. Testing also can be expensive, costing $1,000 to $2,000 to get started, and $1,200 to $2,400 a year in monitoring. Insurers don't cover chelation therapy for autism or other off-label uses.  

New Studies
The metal-cleansing treatment also is gaining ground as a treatment for a range of conditions besides autism, including Alzheimer's and heart disease. A preliminary study published in Archives of Neurology in December 2003 found that removing metals accumulating in the brain of Alzheimer's disease patients using the chelating drug, clioquinol, appeared to slow the progress of the disease. Two institutes of the National Institutes of Health last year opened a clinical trial that so far has enrolled more than 500 patients to test whether chelation therapy benefits patients with heart disease.

Later this year, investigators at Arizona State University in Tempe, Ariz., will launch a clinical trial involving 80 autistic children ages 3 to 9. Half of the children will receive DMSA, the treatment approved by the FDA for lead poisoning. The other half will receive a placebo. The trial aims to demonstrate whether chelation therapy can improve the symptoms of autism.      
* *
Chelation Agents
Some pros and cons in three of the most commonly used chelating agents in autistic children: 
- DMSA Sodium 2,3 dimercaptopropane- 1 sulfate In the oral form, approved by the FDA for treating lead poisoning in children as young as 1. It can remove a wide range of metals, including lead and mercury. Long- term use can potentially cause bone marrow suppression or liver damage. It strips zinc, a beneficial mineral, and supplements may be needed. It can cause gastrointestinal problems to worsen.
- DMPS 2,3 dimercaptosuccinic acid It causes fewer gastrointestinal problems than other agents and may be more effective at eliminating mercury than DMSA. It now comes in a cream form, which is easier to use. DMPS is not FDA-approved although physicians can have it individually compounded for patients. It has potentially serious side effects and blood and urine need to be regularly monitored.
-TTFD Thiamine tetrahydrofurfuryl disulfide In studies, it had a good safety record. In a small study of 10 children on the autism spectrum, most improved clinically. It comes in cream form. It is not approved by the FDA, although physicians can have it individually compounded for patients. It has a strong odor described as “skunk like” even in cream form, and has a bad taste in powdered form making it difficult to give to children who cannot swallow a capsule.  

Source: Autism Research Institute's Defeat Autism Now!Project See: “Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper” http://www.autismwebsite.com/ari/       

Editors Note: It is amazing to see this type of story featured in the Wall Street Journal. Big thanks is needed for this wonderful article! THANKS WSJ!

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Article B: A San Francisco NBC Affiliate Mercury & Autism Interview

Here's a TV interview piece that will probably make you fall off your couch. A very educated and articulate parent on the chelatingkids2 list, JB Handley, has been moving media mountains to get the word out about the autism/thimerosal/mercury connection. He's the guy who single handedly got the 2/15/05 WSJ story about autism and chelation written (contacted the reporter, provided the research, and somehow got it in print).

This week, this guy got an on-air interview with a news reporter from the San Jose/Bay Area, CA NBC-TV affiliate and just put it right out there...autism IS mercury poisoning. He was concise, articulate, and, in my opinion did a huge service to parents of young children with autism who otherwise wouldn't even consider looking into this issue... Kudos to this guy.

Below I've copied (with permission) JB Handley's comments and a link to the video interview he did on the NBC-TV affiliate in  San Jose.

You will need QuickTime to view it. http://homepage.mac.com/rogereng/Autism/iMovieTheater24.html

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Article C: Health Agency Splits Program Amid Vaccination Dispute

By ANAHAD O'CONNOR

Responding to growing concerns about its ability to monitor the side effects of vaccines, the Centers for Disease Control and Prevention decided last week to separate its national immunization program, which advocates vaccination, from its vaccine safety branch, which monitors the potential risks of the vaccines.

The action comes at a time of increasing public outcry over the government's handling of drug safety issues. Earlier this month, the Food and Drug Administration announced that it would create a board to advise it on drug complications and to warn patients about unsafe drugs.

Critics of the disease-control agency have argued for some time that the advocacy nature of its immunization program hinders its ability to monitor and investigate any adverse reactions to vaccines.

Much of the pressure has come from lawmakers and parents of autistic children, who are concerned about a possible link between rising rates of autism and a mercury preservative, thimerosal, once widely used in childhood vaccines. They have argued that the agency's dual role in promoting vaccines and overseeing their safety is a serious conflict of interest.

The decision to separate the offices was announced last Friday, a day after a panel of medical experts urged the agency to improve access to a database of patient information that is at the center of a dispute over whether vaccines can cause autism.

Dr. Julie L. Gerberding, the director of the agency, said that shifting the safety branch was intended to improve its "credibility and capability," and that the branch would now be led by Dr. Dixie E. Snider Jr., the agency's chief of science.

"We believe the best practice for the safety monitoring program is to keep it in a separate locus from the large-scale program," Dr. Gerberding said.

Representative Dave Weldon, Republican of Florida and a physician who has a strong interest in autism issues, called the move "a step in the right direction."

"You can't have an organization whose primary charge is getting kids vaccinated also have credibility in looking at side effects," Dr. Weldon said. "Their primary mission is getting lots of kids vaccinated. I don't think they should be the same people looking at safety."

But Dr. Paul Offit, who was a member of a federal advisory panel on immunization practices, said the idea that the agency would be less concerned about whether vaccines were safe than with seeing that every child received a shot was absurd.

"The notion has been that this is the fox guarding the henhouse," said Dr. Offit, who is also a pediatrician at the Children's Hospital of Philadelphia. "That's not true. They care as much about vaccines being safe as they care about them working. They wouldn't recommend them unless they felt the benefits clearly outweighed the risks."

But Dr. Weldon and others say the agency has made it difficult to assess what those risks might be, particularly as they relate to autism.

Their concerns were echoed on Feb. 17 by a panel of medical experts assembled by the Institute of Medicine, an arm of the National Academy of Sciences. The committee recommended that the C.D.C. ease some restrictions on outside scientists who want to use its heavily guarded Vaccine Safety Datalink, which holds more than seven million medical records that the agency uses to monitor adverse reactions to vaccines.

Dr. Thomas Verstraeten, a former researcher at the agency, used the database to carry out a large study that was published in 2003. Many scientists have said the study shows no statistical link between thimerosal and autism.

But Dr. Weldon and the parent groups, through the Freedom of Information Act, later obtained an earlier draft of the study that had not been made public. The early findings did suggest a relationship between exposure to thimerosal and some developmental delays, and Dr. Weldon and the groups say the results were deliberately "watered down."

Two outside researchers, Dr. Mark Geier and his son, David Geier, who were expert witnesses for parents seeking damages from the National Vaccine Injury Compensation Program, have fought for access to the database. The agency has been hesitant, fearing that doing so could violate the privacy of those whose medical histories are in it.

Dr. Stephen E. Fienberg, a professor at Carnegie Mellon University and a member of the committee that weighed in on the dispute, suggested the Geiers be granted further access.

Now, outside researchers who want access must submit a proposal and obtain permission from the more than a half-dozen health maintenance organizations that provide the centers with their medical records. The report determined that the inquiry process should be streamlined, and listed steps the disease-control agency could follow to balance patient privacy with the need to open the database to some outside researchers.

Tom Skinner, a C.D.C. spokesman, said his agency would consider all of the committee's recommendations and work to carry them out.

"We're going to continue to deliberate on them as we strengthen our vaccine program," Mr. Skinner said. "All of this supports our desire to continue to place a high priority on vaccine safety."

The agency has come under fierce criticism for its handling of the preliminary findings from the 2003 Verstraeten study. Dr. Weldon has alleged wrongdoing, pointing to transcripts of a private meeting where agency staff members shared Dr. Verstraeten's findings with representatives of the vaccine industry, government officials and physicians.

The study's authors have argued that later phases of the study were intended to replicate earlier findings, but found no association between thimerosal and developmental delays. Numerous epidemiological studies conducted in Europe have also shown no link between autism and vaccines containing thimerosal.

Anahad O'Connor reported from New York for this article, and Gardiner Harris from Washington

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Article D: Gene Linked to Heavy Metal Poisoning

Atlanta Journal Constitution (subscription) - GA,USA
 
WEDNESDAY, Feb. 16 (HealthDay News) -- A gene responsible for spreading the toxic effects of cadmium, and perhaps other heavy metals, throughout the body has been identified by University of Cincinnati (UC) researchers.

The finding may help scientists develop a way to prevent cadmium toxicity in humans. Cadmium, which is present in cigarette smoke, soil and some plants, shellfish and seafood, is suspected of causing birth defects and lung and testicular cancer, as well as damage to the central nervous system, lungs and kidneys.

Studying low doses of cadmium in mice, the UC team found that a gene called Slc39a8 works to transport cadmium to the testes, resulting in tissue death.

"We suspect that cadmium at higher doses could be transported to other regions of the body via the Slc39a8 gene or another gene in this family. We know that humans carry the same gene and gene family. Thus, we have identified a target that could be used to prevent cadmium's toxic effects in human populations," study leader Dr. Daniel W. Nebert, a researcher at the Center for Environmental Genetics, said in a prepared statement.
The study will appear in the March 1 issue of the journal Proceedings of the National Academy of Sciences.

"We believe that the Slc39a8 gene could be responsible for the transportation not only of cadmium, but also of other nonessential heavy metals such as lead, nickel and mercury. Identification and characterization of this gene in mice is a significant breakthrough that will improve our understanding of how heavy metals actually cause toxicity and cancer in humans," Nebert said.

More information- The U.S. National Library of Medicine has more about toxic chemicals.
http://www.ajc.com/health/content/shared- auto/healthnews/envm/523998.html

6. TACA Survey Update

Only 105 surveys have been collected since August 2004 at the TACA meetings. We would like to hear from you regarding WHAT YOU WANT TO HEAR, what is important to you and your family.

Below is a summary grouped by topic and highest priority of the surveys collected to date. Please be sure to let us know what you want to hear about in 2005. To request your free survey form, please contact us

7. TACA Mom Still In Need - Please Read

A TACA family is in great need. If you can help – please help!
Our very own Ruthie Daniels is a 36 yr old TACA single mom just diagnosed with Hodgkin's Lymphoma this past month. She is undergoing chemotherapy and needs your help. Ruthie will have to complete 6 months of chemo and will need help during this time. She is a single mom with 2 boys, one with autism (Noah) and one with ADHD.

Ruthie's needs are as follows:

• THE BIGGEST NEED IS ONE-ON-ONE BABYSITTING: Anyone who lives in South Orange County and could take Noah to the park or watch him for a couple of hours between 2:30-4:30 Monday - Friday. One-on-one babysitting is recommended for Noah.
• THERAPY HELP: If anyone knows a therapist trained in RDI methodology, she will be losing her therapist. $20 an hour is the most she can pay, 4 to 6 hours per week at her home.
• RUNNING ERRANDS: Ruthie needs help with grocery shopping and errands and to the pharmacy.
• COOKING: LOTS OF COOKING AND FOOD DROP OFF IN PROGRESS! A big thank you to all for helping with this!!
• CONTACT INFO: Ruthie lives Laguna Niguel. Her number is 949-347-8532. Please do not call late -- she is very tired.

THANK YOU FOR ANYTHING YOU CAN DO TO HELP!

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

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, CA

Workshops are free!

3/10/2005 TASK Basic Rights Course 
3/12/2005 TASK Transition to Public School Course - Mission Viejo 
3/16/2005 TASK IEP Tips and Pointers - Mission Viejo 

Reservations are required - Call (714) 533-8275 to reserve your spot!

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One day workshops for caregivers of Children with Autism Spectrum Disorders are offered by *S*P*I*R*I*T* (Supporting Parents in Reinforcement, Intervention and Techniques) in four locations - Manhattan Beach, Pasadena, Santa Monica and Northridge.  Topics include characteristics of children with autism spectrum disorders; chronological and developmental ages; Piaget's cognitive development and Kohlberg's moral development; diagnosis, assessment and recovery; developing a family vision and plan; changes to parents behavior and approach; behavior management, functional analysis of behavior and task analysis; and other interventions.  A hosted lunch features a video of four young adults discussing growing up with autism.  The presenters, Jeanne LaPorte, R.N. and Peggy Main, L.C.S.W., have more than 30 years professional and personal experience working with individuals and families at UCLA and in private practice.  Both are parents of special needs children, one a 28-year-old with autism.  The workshop is $75 and is Regional Center vendored (vendor number PL05787.)

Dates and locations are: March 19, Pasadena; April 9, Manhattan Beach; April 16, Northridge; May 21, Santa Monica; June 11, Pasadena and July 9, Manhattan Beach.   Please contact Jeanne or Peggy at 818-749-1401 or 888-421-6121 (toll free) for more information or to reserve a space.  Flyers and brochures are available.

*S*P*I*R*I*T also does a no-charge 45-minute presentation for support groups entitled "In Praise of Parents."

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Autism and Special Education Training: “A Roadmap Through the Land of Autism”

WHEN: 3 consecutive Saturdays: February 26, March 5, and March 12, 2005, from 9 a.m. to noon

WHERE: West Valley College (offered through the college’s Office of Community Education)

14000 Fruitvale Ave. , Saratoga, CA

FEES: $49 per person; $89 for two persons registering concurrently

HOW TO REGISTER: By phone with the Office of Community Education: 408-741-2096

About the course : Whether you are the parent of a newly-diagnosed child or a veteran parent, this course should be helpful to all, as it covers a breadth of significant issues facing autistic children and their families. The instructor has designed the course to help parents, caregivers, and other persons working with autistic children in various capacities to understand better what autism is and how to work successfully with the autistic child.

Additional information : If you have specific questions regarding the course that are not already addressed in the course description below, you may call the instructor at 408-483-8557. The instructor has kindly offered to speak with prospective students who call with inquiries regarding the course, on her own personal time, as her time permits. She will attempt to return calls to those callers leaving a land line telephone number that is within the local 408 area code and that does not block incoming calls.

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“White Matter Changes in the Autistic Brain: Thinking About the Implications” by Martha Herbert M.D., Ph.D.

The Los Angeles Chapter of the Cure Autism Now Foundation will be hosting a workshop by Martha Herbert M.D., Ph.D. “White Matter Changes in the Autistic Brain: Thinking About the Implications,” on March 5, 2005. We encourage you to join us for this rare opportunity to hear the most current neurobiological findings in autism and the doors they open to new ways to understand the origins and nature of the disorder.

When:   Saturday, March 5, 2005

Time:   1-3 PM

Where:    Santa Monica College Business Building Room 111

1900 Pico Boulevard, Santa Monica , CA   90405 (310) 434-4000

Parking:  

Please park in Parking Structure A, which is located on the corner of 17 th and Pico. Parking is free and conveniently located in front of the Business Building.  Meeting will be in B-111.

RSVP: Lisa Hill at Cure Autism Now: lhill@cureautismnow.org or 888-8AUTISM x38. Please reference the “LA-Herbert Event”.

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FOURTH ANNUAL CASA COLINA TRENDS IN AUTISM CONFERENCE SAT. & SUN., MARCH 5 & 6, 2005
This conference will bring together researchers, clinicians and parent leaders who are breaking new ground in the diagnosis, treatment and understanding of autism spectrum disorders.  They will make presentations geared to cover three essential areas: the medical issues and the physiology of the brain relative to autism, effective treatment being practiced today, and prospects for the future for young people with autism.  Physicians, educators, therapists and parents will find valuable information and insights to assist them in working with individuals with an autism spectrum disorder.

TOPICS WILL INCLUDE: Neurology of autism, information processing, early identification, MRI & imaging, video modeling, direct therapy approaches, behavior management, parents as advocates and making a life for a person with a diagnosis on the autism spectrum.

SPEAKERS WILL INCLUDE: Margaret Bauman, MD; Blythe Corbett, Ph.D.; Eric Courchesne, Ph.D.; Margaret Dunkle; Temple Grandin, Ph.D.; Nancy Minshew, MD; Suzanne Reyes, Ph.D.; Michael Weiss, Ph.D.; and Rosemary White, OT.

Conference site: Claremont McKenna College Claremont, California
Sponsorship opportunities available Call (909) 596-7733 Ext. 2209 for more information or go to www.casacolina.org
Casa Colina Centers for Rehabilitation, 255 East Bonita Avenue Pomona, CA 91769-6001
rehab@casacolina.orgSpeakers and program subject to change

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Packing Your Own Parachute -- You wouldn’t jump out of an airplane without a well packed parachute would you?

Wednesday, March 9, 2005 7:00pm – 9:00pm

at the UCI Child Development Center 19262 Jamboree Road, Irvine 92612(between Birch and Fairchild, across the street from Starbuck’s) For more info, (949) 824 – ADHD (2343)

So WHY would you take your child to a family reunion or the mall without a plan? Creating an organized approach to outings can increase the potential for success and enjoyment. Don’t just HOPE things go well, HOPE that your child feels like behaving, HOPE that you can struggle through it.

Enjoying time with your child is a goal every parent desires and we’ll talk about how to create an alliance with him/her and work together in search of that goal. Understanding your child’s personality, energy, and potential will help you create plans that will enable you both to create positive experiences.

Come for a night of adventure, as Dr. Robbi Woolard shares strategies, stories, and solutions to the struggle for sanity as parents. Robbi is a psychologist with UCI-CDC and is also coordinator of social skills. She has worked for over 25 years as a social worker and psychologist in the public schools, private practice, adoption and foster care, and Head Start. Robbi sees life as one big adventure and along with raising two sons, has traveled the world over, done ultra distance running, swims and triathlons, kayaked, scuba, and oh, yes, she did jump out of a plane.

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March 24 and 25, 2005: OC Department of Education: Michelle Garcia Winner

Social Thinking HFA / Asperger's

Time : 8:30am - - 3:30pm both days.

Location: Orange County Department of Education, 200 Kalmus, Costa Mesa.

For more information, please contact: Contact: Andrea Walker Andrea_Walker@ocde.k12.ca.us (714) 966-4198
Registration fee : $50/$60

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Thoughtful House Conference – featuring Dr. Andrew Wakefield, Dr. Arthur Krigsman and many others

Austin In Action The Evolving Medical Model in Childhood Developmental Disorders: Implications for Clinical and Educational Care

Sunday, April 3, 2005 at the Austin Downtown Omni Hotel, 700 San Jacinto at 8th Street, Austin, TX 78701 (512) 397-4858

For more info http://www.thoughtfulhouse.org/events.htm

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Coaching Group for Parents of Special Needs Children

Join us to consider questions regarding topics such as toileting, sleep routines, discipline, sibling issues and parent stress.

We will meet weekly for four weeks. Starting: April 4th thru April 25th.

Fees: $15.00 per session

Where: 19742 MacArthur Blvd. Ste.130, Irvine, 92612

When: Monday evenings 7:30 to 9:00

Contact: Susan Gonzales, LCSW  310-770-5009 or Karen Cladis, LMFT 714-490-3780

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The Amazing Autism One Conference is Back!

www.autismone.org – At the OHare Chicago Marriott

May 26-29, 2005. Over 100 speakers – the “who’s who” in Autism with the following four tracks to choose from:

• Biomedical Treatments
• Behavior / Communication / Education Therapies
• Complementary / Alternative Treatments
• Government / Legal / Personal Issue

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Great Plains Labs – Latest on Biological Treatments for Autism

Anaheim , CA on June 18-19, 2005. For more info: www.greatplainslaboratory.com

Speakers and topics including: Dr. William Shaw “The Importance of Biological Interventions in Autism” and a separate track “The Roles of Supplementation”, Lori Knowles “A Mother’s Success Story: How I was Able to Make a Difference in My Son’s Life”, Dr. Kurt Woeller “Autistic Spectrum Disorders-The Need for a Comprehensive Approach to Health and Recovery”, Dr. and Mr. David Geier “The Link Between Vaccines and Neurodevelopmental Disorders”, Lisa Ackerman “Support and Medical Intervention - A Parent’s Perspective”, Doreen Granpeesheh “ABA: One Piece of the Autism Puzzle”, Dr. Rashid Buttar “Chelating Heavy Metals With DMPS”, and Kelly Dorfman “Sensory Nutrigation-How Nutrition Affects Sensory Development and Sensory Issues Affect Eating”

Special note: Conference will also be simultaneously broadcast in Spanish.

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DEFEAT AUTISM NOW: October 2004 Los Angeles conferences. The web conference also includes the Recovered Autistic Children event.  To learn more about the DAN! web conference and to subscribe, visit: www.ARIWebConference.com or www.danconference.com

The past 10 days in the autism world have been unprecedented and a big blessing to our community. I lost count on how many articles came out during this time period (it is well over 40) and there must have been at least 10 hours of morning, afternoon and evening coverage on autism on NBC and many other networks.

While I did not agree with everything presented (I rarely do), I am extremely appreciative for the attention and coverage to this previously silent epidemic. Many of the worthwhile articles are represented here in one of the longest TACA enews editions created since our beginning in November 2000.

I sent a note off to the man primarily responsible – Bob Wright – a top executive at NBC and grandfather of a autistic grandson.

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Dear Mr. Wright:

First a heart felt thank you for your share of the in-depth coverage on autism this week.  BRAVO!  I was very pleased. The coverage this week regarding autism is unprecedented and wonderful. It is truly amazing and a blessing for the autism community. For the over 1.5 million affected it feels likefinally some much needed attention to this important matter!

Second and more importantly – I am sorry about your beloved grandson’s diagnosis of Autism. It is a club that I wish I did not have so much company.

As with many viewers – autism is a daily part of our family’s live because of my beloved son Jeff. He was diagnosed autistic on September 30, 1999 as moderate to severely autistic after months of frustration, seeing many professionals looking for answers and watching him disappear a little more each day. It was a heartbreaking time.  The hardest part for our family – most likely more for Jeff – is we had perfection for 16 months – everything was according to the baby books.  Everything changed right at the time of his multiple dose vaccines while he was sick with a cold. I will never forget the day in June 1998 of those vaccines when I asked if we could put them off until the next visit and the day in September 1999 will forever be etched in my memory over any holiday, any special date or celebration. That was the day when our Jeff was changed forever.

Fast forward five years, Jeff has made amazing progress with a hard 7 day a week job.  He has done thousands of hours of ABA, speech, occupational therapy, listening therapies and countless biomedical interventions.  Today my son attends first grade in a typical class with an aide. Today he has a voice, an incredible smile and jokes with friends. This is a far cry from a severe diagnosis of autism. But still today his work day continues and he will work four times as hard for what we all take for granted living in the world we live in. He is a miracle and life with him is a joy.  It was not that way last year and certainly not that way five years ago.  Today we have much to celebrate but still a lot of work ahead. 

Now after some words about my favorite topic I would like to turn back to this past weeks coverage on autism. While (as usual) I don’t agree with everything presented I have been thrilled with the amount of coverage. The issue to me has been some inaccurate reporting in information in two key facts including;

1) Vaccines no longer contain thimerosal and

2) Thimerosal was removed from all infant / childhood vaccines in 1999.

These statements are not true. Please note: there 3 major infant / child recommended vaccines contain thimerosal today (see links below.) In addition RhoGam for RH negative mothers contained a significant amount of thimerosal (25 micrograms per dose) and was typically given multiple times during pregnancy and while nursing.  A small note should also be made to amalgam fillings, the consumption of mercury containing fish, and our air.  In addition, the most important fact is thimerosal was dramatically removed from most vaccines by late 2002 not 1999. These three years are very important. The importance of this information allowed one expert quoted this week to conclude that the dramatic increase of autism could not be associated to vaccines then because there would have been a drop in diagnosis by now. Please note: per renowned Epidemiologist it takes about five years for the data to catch up to the numbers by an environmental change so we need to talk on this topic again around 2007 to see the trend in the data. And as reported, many children don’t get diagnosed with autism until after age 3 to 5 years.

Please note: If you are wondering which vaccines currently contain ethylmercury and which do not, visit these Federally maintained web sites:
- http://www.vaccinesafety.edu/thi-table.htm and
- http://www.vaccinesafety.edu/thi-table.htm#2

I left my high paying executive job to help my son Jeff. It was a hard task to do for our family but the best decision I have ever made. Surely the economy would appreciate me to keep working!  But my job was at home.  Autism now only costs in a child’s life but touches much more economically over therapy and medical fees – it should also be calculated in lost wages.

In addition our family started a support group called TACA – Talk About Curing Autism. We started in November 2000 just so we could have friends over to BBQ with children like Jeff. Today we have 1,600 families with seven meeting locations in California with all services free to families affected by autism.  Now I have another job besides Jeff – but one that does not pay me other than the amazing results in many children and the hope in parents eyes. (Thanks for listing us under the NBC resources! Hopefully we can help more families!)

The NBC Coverage is “all the rage” on all the autism groups, chat rooms and meetings. Many families are pleased by the coverage. Some like me notice the inaccuracies in the reports and biased opinions of the experts. I guess that was to be expected. Sorry to not sound grateful you need to know - I truly am. Bottom line: we need help in awareness and raising funds for research for autism’s cause, treatment and cure. I truly feel this coverage and your new foundation Autism Speaks will greatly assist in these efforts. That is what is so wonderful about this week! And I apologize for the long note – but I could write for hours on this topic. I had to write to say “Thank you!” but also let you know about a special boy named Jeff.  He has autism.

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

And Editor: Kim Palmer (thanks Kim!)