Autism services hard to get, family says
First of a two-part column Tuesday, May 29, 2007

By YVETTE CABRERA Register Columnist
It was a peaceful Sunday morning in late spring last year and Tom and Cathy LaPonsey of Rossmoor were talking with friends outside of church when their 4-year-old son Liam suddenly darted toward the street.

Kathy ran after her son, but Liam had already sprinted between two parked cars and into the street. Fortunately, an oncoming car whose driver caught sight of Liam slammed on the brakes and with tires screeching came to a halt about a foot from the boy, Tom LaPonsey said.

Liam escaped without a scratch, but Kathy was so traumatized that she fell to the sidewalk and broke into sobs.

It's not the first time Liam, now 5, has almost been hit by a car. For the LaPonseys it's a regular occurrence because Liam has autism and runs away in public places. Three months ago, he escaped from his doctor's office into a parking lot, and he has also run from his driveway into the street.

Autism is a developmental disability that causes impairments in four key areas: social interaction, communication, behaviors and learning. It has increased at such an alarming rate that some experts are describing it as an epidemic, and the Centers for Disease Control and Prevention reports that about 1 in 150 children have autism today.

Liam was diagnosed about three months before his third birthday and began receiving services such as behavioral therapy paid for by the Regional Center of Orange County, one of 21 private, nonprofit corporations funded by the state to provide services to people with developmental disabilities.

At first, the LaPonseys thought the agency was a godsend, but they quickly became frustrated and disillusioned, said Kathy, a former nurse who left her job three years ago so she could better aid Liam.

When Liam was initially evaluated by the agency, Kathy said the regional center informed her that he had developmental delays, would receive therapy through the agency's Early Start program, and advised the LaPonseys to find a neurologist to diagnosis him, which they did.

Then the LaPonseys learned that at the age of three, children in the Early Start program must be evaluated to determine whether they will continue to qualify for services paid by the state as set forth under the Lanterman Developmental Disabilities Services Act. Liam turned three on Jan. 28, 2005.

By law, after the age of three local school districts must provide children with developmental disabilities an educational program that is free and appropriate for each child. However, the LaPonseys knew that if Liam qualified for services under the Lanterman Act, that the agency would still be responsible for providing additional services.

"Our concern is his in-home behavioral aspects, his social aspects in the community outside of the school, and his safety when he's not at the school. Those are the things that the school districts are not responsible for," said Tom, a fire captain at a Los Angeles-area fire station.

In February, 2005 the RCOC notified them that Liam would qualify for services, but their case worker offered little to no help with the transition, they said. On the contrary, Kathy said she was combative and told them to seek services from their local school district, their insurance or other means.

"She'd tell us 'What's your problem. What do you expect from us,' " Kathy said. "This is an organization that in my opinion is supposed to alleviate the stress from families, fight for their child's highest level of functioning. They handle all kinds of disabilities and their motto is we want them to be at their highest level of functioning, but they're not offering that."

Even before Liam had turned three, Tom began inquiring at the agency about having an in-home behavioral evaluation to see if Liam would qualify to receive in-home behavioral services to tackle issues such as his tantrums, uncontrolled screaming and his tendency to run away.

But Tom said their case worker informed them that the agency "doesn't provide one-on-one behavior services after the age of three."

RCOC Chief Executive Officer Bill Bowman told me that about a year ago his agency launched a behavioral services initiative to address these issues, and that in the past case workers may have told families "these services are the school district's responsibility," but that is no longer the case.

"What we're saying now and we're training all of our staff is: 'We also have responsibility to provide services for families,' " said Bowman.

These delays in receiving services, however, are not a thing of the past. Talk About Curing Autism, an organization founded in Orange County by parent Lisa Ackerman, represents about 1,000 families in Orange County and a total of nearly 2,300 families across the state served by the 21 regional centers. By far, says Ackerman, RCOC has the worst complaint record with regards to services provided, according to TACA parents who have experienced the same treatment as the LaPonseys.

Also, data provided to me by the RCOC shows that the percentage of Early Start children who subsequently don't qualify for regional center services after the age of three under the Lanterman Act is significantly high. For the last fiscal year (2005-2006) out of 1,791 Early Start children, 87 percent (1,564 children) did not qualify for services. The previous year, 84 percent did not qualify.

In May 2005, Liam was evaluated, but by August he was still not receiving in-home behavioral services and Tom fired off an angry letter to the RCOC. The clock was ticking for Liam at a time when experts say early intervention is crucial to address the behavioral issues faced by autistic children.

Coming Thursday: The outcome of Liam's evaluation and the LaPonseys' struggle to secure therapy for their son. Contact the writer at 714-796-3649 or ycabrera@ocregister.com

Family fights for each hour of help – Part II

Thursday, May 31, 2007

One in a series on the Regional Center of Orange County

YVETTE CABRERA

Register columnist ycabrera@ocregister.com <mailto:ycabrera%40ocregister.com>

At their home in Rossmoor, Tom and Kathy LaPonsey have a binder as thick as two encyclopedias that's filled with paperwork and research tied to their 5-year-old son Liam's treatment for autism.

When Liam was diagnosed with autism, a neurological disorder, he barely spoke.

He had a 20-word vocabulary, was uncontrollable, screamed constantly and couldn't focus on a single task, said Tom LaPonsey, a fire captain.

Since then, they've learned a lot in their journey to ensure Liam's needs are met. From the beginning, one thing was clear: If Liam was to have a chance at becoming self-sufficient and independent, his best shot would be one of the clinically proven therapies known as applied behavior analysis.

"Our goal for him is for him to reach his highest potential, and all of the studies show that in that 3-to-5-year age range, intensive therapy . is going to be the best," said Kathy LaPonsey, a nurse who cares for Liam full time.

Jessica Postil, clinical director of Autism Spectrum Consultants in Newport Beach, agrees, saying children must get intervention as young as possible because delays in treatment can further embed negative behaviors.

"We need to apply the best practices right away so we don't have to solve the problem later, because that's so much more difficult and challenging for all those involved, and I think requires a lot more resources," says Postil, whose agency has state certification to implement behavioral programs.

The LaPonseys sought services for their son through the Regional Center of Orange County, a nonprofit private corporation that receives state and federal funding to support people with developmental disabilities.

But when they requested in-home applied behavior analysis for Liam after age 3, center staff members told them that the agency didn't provide this assistance and that they should seek these services from their school district.

About a month before Liam's third birthday, in early 2005, Tom requested an evaluation to see if his son would qualify to receive in-home applied behavior analysis. An agency contracted by the center did an evaluation almost six months later.

The agency that evaluated Liam, the California Institute of Behavior Analysis, recommended 15 hours a week of in-home behavioral services as well as parent training.

The center funded five hours, of which three were to be spent on direct therapy for Liam and two on parent training.

The LaPonseys immediately protested.

Tom says the center told him that Liam couldn't handle 15 hours a week.

"So we said: Where's the documentation that says so? Because we've got literature that says these kids thrive on up to 40 hours a week of therapy," Tom said.

As the two parties wrangled over the hours, the clock was ticking for Liam. His in-home therapy didn't start until December 2006.

"This is ... his most important development period," said Tom. "It's almost a sin that they could stall and perform this poorly to let a child with this debilitating disorder fall that much further behind."

Documents show the center's rationale for offering five hours of in-home services was that Liam was already receiving 10 hours of direct applied behavior analysis from his school.

The LaPonseys said his school therapy addressed his learning needs, not his home behavior.

In an interview, Chief Executive Officer Bill Bowman said the center did not think Liam's in-home therapists were addressing the goals for which the center had agreed to pay.

"I think we have to own that the communication between the regional center and the vendor was just not what it needed to be in order to get clarity for this family for what we were buying," said Bowman, adding that the center, too, was concerned with the way Liam's five hours had been split.

The center eventually agreed to fund seven hours of in-home services, including five hours of direct therapy for Liam.

"Today, the difference between 1 1/2 years ago, then and now, is that we have far more professional vendors, a far clearer understanding of our role, our interaction with the vendors, a far clearer staff," said Bowman. "We're in a much stronger place, and I think perhaps the LaPonseys would say the services are just simply delivered in a better way and the communication is in a better place."

The LaPonseys disagree. Liam's in-home services were increased to about 10 hours a week, but they say this happened only because Kathy filed the paperwork for a fair hearing to challenge the hours.

At school Liam has progressed and become a class leader, according to Tom, but at home he still struggles with many of the issues he faced a year ago, including running away in public places.

"We don't want him to be part of the Regional Center his whole life. That's why we are asking: Give him what he needs now to be successful," said Tom. "Why not spend the money where it's going to matter instead of giving them the minimal amount and they'll stay in the system forever?"

Contact the writer: 714 -796-3649 or ycabrera@ocregister.com

BACKGROUND: Katie Wright Hildebrand, daughter of the head of NBC, speaks out about her son who has autism, along with author David Kirby who has written the book "Evidence of Harm." This interview was featured at the Autism One conference regarding vaccine issues, autism effects on a family, Autism Speaks and some issues compounding the problem.

Link to the video

http://tinyurl.com/36czfc

A couple's decision to take in an autistic child draws callous reactions.

By Ralph James Savarese

RALPH JAMES SAVARESE is the author of "Reasonable People: A Memoir of Autism & Adoption," which will be published Tuesday by Other Press.

May 21, 2007

'WHY WOULD anyone adopt a badly abused, autistic 6-year-old from foster care?"

So my wife and I were asked at the outset of our adoption-as-a-first-resort adventure. It was a reasonable question in this age of narrow self-concern ˜ far more reasonable, or at least more reasonably put, than many of the other questions we fielded.

For example, "Why don't you have your own children?" a wealthy relative inquired, as if natural family-making were a kind of gated community it was best never to abandon. "You two have such good genes," she added. "Why waste them?"

A colleague at work confronted me in the mailroom with this memorable gem: "Have you tried in-vitro?" She feared that we hadn't availed ourselves of the many wondrous technologies that rescue infertile couples. "Wouldn't that be better than adopting a child with a disability?" she asked, drawing out the word "disability." "God knows what that kid's parents were doing when they conceived him."

"We're not infertile," I barked. "We have a relationship with the boy."

My wife, an autism expert, had offered his mother services, but as the woman found it increasingly difficult to care for her son and then dropped out of the picture altogether, we'd started spending time with him. His first communicative act with language, at age 3 – the sign for "more" – we'd taught him while tickling his belly.

He later made that sign in the emergency room of a hospital where he was brought after being beaten in foster care. Upon seeing us – we'd been called in to try to calm him – he stopped in his tracks, paused (as if to allow some associative chain to complete itself) and demanded obsessively to be tickled. I remember searching on his chest for unbruised patches among the purple, blue and black. He was that frantic in his quest for the familiar and, dare I say, for love.

To this day, I can't believe how callous people were; the strange anxiety that adopting a child with a disability provoked. And the anxiety just kept coming. "Healthy white infants must be tough to get," a neighbor commented. No paragons of racial sensitivity, we were nevertheless appalled by the idea that we'd do anything to avoid adopting, say, a black child or a Latino one.

As offensive was the assumption that we must be devout Christians: hyperbolic, designated do-gooders with a joint eye firmly on some final prize. "God's reserving a special place for you," we heard on more than one occasion, as if our son deserved pity and we were allowed neither our flaws nor a different understanding of social commitment. The journalist Adam Pertman, in his otherwise excellent book, "Adoption Nation," reproduces this logic exactly when he speaks of "children so challenging that only the most saintly among us would think [my italics] of tackling their behavioral and physical problems."

Despite the stigma attached to "special-needs children," people do adopt these kids. And yet, many more Americans spend gobs of money on fertility treatments or travel to foreign countries to find their perfect little bundles. I'm haunted by something my son wrote after we taught him how to read and type on a computer: "I want you to be proud of me. I dream of that because in foster care I had no one."
How many kids lie in bed at night and think something similar?

The physical and behavioral problems have been significant, at times even crushing. The last eight years have been devoted almost exclusively to my son's welfare: literacy training, occupational therapy, relationship building, counseling for post-traumatic stress – the list goes on and on. But what strides he has made.

The boy who was still in diapers and said to be retarded when he came to live with us is now a straight-A student at our local middle school. He's literally rewriting the common scripts of autism and "attachment disorder" (the broad diagnosis for the problems of abandoned and traumatized kids). These are hopeless scripts, unforgiving scripts in which the child can't give back.

My son does, and others can as well. Recently, in response to my hip replacement, he typed on his computer, "I'm nervous because Dad has not brought me braces [his word for crutches]." I was just home from the hospital – wobbly, a bit depressed, in pain. To my question, "Why do you need crutches?" he responded endearingly, "You know how I like to be just like you." My son was trying to make me feel better, taking on my impairment, limping with me.

Editor’s note: Simply: I LOVE THIS FAMILY!!!

According to information released last week by California's Department of Developmental Services (DDS), during the 91 day period that was the first quarter of 2007 (Q 1), 886 new children with a professional diagnosis of full syndrome DSM IV autism, NOT including PDD, NOS, Asperger's Syndrome or any other autism spectrum disorder were added to California's developmental services system.

There were a total of 1570 total new intakes during Q 1 2007 which included children with autism, cerebral palsy, mental retardation, epilepsy, and a myriad of rare genetic conditions such as Fragile X, Down's Syndrome, etc. Of the 1570 total new intakes, 886 or 56% were full syndrome autism cases. The 886 new intakes during that 91 day period represents the second highest number of new intakes for a quarter reporting period in the 38 year history of California's developmental services system. On average, California is currently adding 10 new children a day, seven days a week with full syndrome autism to it's system.

In 1971,California included autism as a qualifying condition to it's developmental services system. During the 16 year period from 1971 through 1987, California had a total caseload of roughly 2700 persons with autism.
During the past nine months alone, from July 2006 to April 2007, California added roughly 2700 new cases. What use to take 16 years in caseload growth now takes 9 months!

Twenty years ago in 1987 there were 2700 persons with autism in the system, today 20 years later, there are nearly 34,000....92% born after 1980, 84% under the age of 21, and 78% under the age of 18.

We are still waiting for the missing 14,000+ adults with autism that should be in our system if there has not been a real increase in autism to show up now that we know what autism looks like (HaHa). Still no sign of them. The fact is, they do not exist. In California's system today, less then 2 out of 10 persons with autism are 22 years of age or older, the remaining 8 1/2 out of 10 are between the ages of 3 and 21.

http://www.smartmoney.com/mag/index.cfm?story=june2007-autism

By Amanda Spake | Published: May 8, 2007

BRIAN ROSENBERG SUFFERS from autism. And while that term can describe a wide range of developmental problems, says Jon Rosenberg, Brian's father, "My son is at the severe end of the spectrum." At that level of severity, he explains, "Kids don't know how to imitate, and that's how most kids learn. It took weeks to teach my son to get himself a glass of water, months to teach him how to use a fork and spoon."

Brian has learned these skills by working one on one with a behavioral therapist, day in and day out, since his diagnosis. Behavioral therapy for autism can cost as much as $60,000 per year, a serious financial challenge for a family whose insurance won't cover it. Indeed, many families have no coverage for the services that autistic children need most. The Rosenbergs are lucky: Jon's employer, the software giant Microsoft (MSFT: 30.78, +0.03, +0.1%), covers behavioral therapy as part of its health-benefits package. But that wasn't always the case — and the story of how the policies changed at the Redmond Empire is instructive for any family facing a costly medical problem.

Statistics collected yearly by the Department of Education show that the number of children between ages 6 and 21 with autism or autism-like developmental disabilities has increased by 500% in the last decade. A recent report by the federal Centers for Disease Control and Prevention shows that as many as one child in 150 is now diagnosed with an autism-type disorder. While doctors have been unable to explain the reasons behind this startling increase, research on how best to treat and teach autistic children has confirmed the value of an early intervention program that relies on intensive behavioral therapy. More than 500 medical studies published in the last two decades support the idea that behavioral techniques, focused on teaching everything from language and academics, to basic life skills, can help substantial numbers of preschool-age children with autism achieve intellectual, academic, communication, and social skills that approach normal range.

Yet, too often health insurers do not cover such treatment, and few corporate benefit managers are aware of the significant problems this gap in coverage creates for their employees who struggle to pay for their autistic children's therapy.

Jon Rosenberg was determined to change all that, if not in the world as a whole, at least in the world of Microsoft. "About eight of us parents got together in 1999 and were comparing notes on how behavioral therapy was effective for our autistic children," he recalls. They decided that each would send an email to the president of human resources at Microsoft. "Each of us told him about autism, how it affected our children, about behavioral therapy and what a great, positive impact it was having on our children and our families."

The company immediately promised to look into the issue — but it probably wouldn't have done so without prompting. "That started the dialogue," recalls Mark Stoppler, program manager for U.S. benefits at Microsoft. At the time, Stoppler says, very little was understood in the insurance and benefits world about autism or autism treatment. Coverage of speech therapy, physical, and occupational therapy was typically denied because insurers assumed that speech would eventually come to all children, and that occupational and physical therapy were appropriate treatments only for adults.

To its credit, Microsoft did not take those assumptions for granted. "We worked extensively with the University of Washington's autism center to get an understanding of the condition, the types of treatment available, which showed the most promise," explains Stoppler. The university provided background on Applied Behavioral Analysis, a type of behavior therapy for autism that has proven successful in many clinical studies. Once Microsoft decided ABA would be worth covering, the school helped the company design a benefit plan around the treatment.

Microsoft, a self-insured health-care provider, pays 80% of the cost of ABA. Because research suggests that the type of early intervention needed by most autistic kids required three years of intensive behavioral therapy, Microsoft imposes yearly and lifetime limits based on those assumptions. Microsoft recognizes and compensates for two levels of care: The benefit provides for a program manager who oversees each child's entire treatment program, as well as for the therapy assistants, who are the day-to-day providers of the therapy. Speech, occupational, and physical therapy recommended by the program manager are also covered at 80%.

To employees of Microsoft who have autistic children, the value of these benefits is almost incalculable. "This therapy is literally Brian's lifeline to the world the rest of us live in," says Jon Rosenberg. "It gives him a sense of control in his life. Brian is 14 now, and I can see by 20 or 25 he will have learned enough to have independence in his life." Better still, "Now, the world is not just a place making all of these demands on him that he doesn't understand, it's a place he can have fun, too."

Microsoft's approach to autism benefits remains more the exception than the rule. But a few other corporations have taken similar steps. Home Depot (HD: 38.77, +0.14, +0.4%), for example, began covering the full range of treatment for childhood autism as part of its health insurance benefits for the company's 365,000 employees about eight years ago. Roughly a year and a half before autism coverage was added, employees who had been denied behavioral, speech, physical and occupational therapies for their autistic children had to appeal the denials, first to the company's insurance carriers, then to the company's benefits managers. And often, even the appeals were denied.

According to Illeana Connally, the company's vice-president for benefits, Home Depot eventually was persuaded by unhappy employees to look more deeply into the issue of autism. Connally and her staff consulted various research centers that specialize in the treatment of children and adolescents with developmental disabilities, including one that was particularly close to home: the Marcus Institute in Atlanta, which was originally founded through a gift from Bernard Marcus, the founder of Home Depot, and his wife. Home Depot eventually fashioned a package of autism benefits that was essentially written by medical experts from the Marcus Institute and the Kennedy Krieger Institute, a treatment and research center in Baltimore. The policy covers cognitive behavioral therapy, occupational therapy, speech therapy and physical therapy for children with autism, as well as for kids with Down Syndrome, cerebral palsy or a severe neurological or genetic disability.

Connally is hopeful that a wider array of companies will institute autism coverage in the future. Indeed, advocates of such care may have numbers on their side: The one major cost-benefit analysis of behavioral therapy for autism, a study published in 1998 in the journal Behavioral Interventions, suggested that the savings in unneeded social services could be substantial if every autistic child was offered these services. Using a model that assumed preschool children with autism would receive three years of early intensive behavioral intervention from age 2 until they entered school at age 5, the study concluded that by investing about $50,000 per child yearly for three years, more than $1 million per person would be saved by the time these children became 55-year-old adults. Since as many as 500,000 kids may be diagnosed with autism by 2010, early behavioral therapy looks like it could be a good investment.

The Age of Autism: Quite the Coincidence

By Dan Olmsted for UPI.

It's amazing the coincidences one comes across while reporting about autism: The autism rate rises in tandem with increasing numbers of vaccines that contain a known neurotoxin, ethyl mercury.
Public health authorities say that's coincidence.

Parents say their children became autistic after receiving mercury-containing vaccinations, sometimes several shots in one day.

Pediatricians call that coincidence, too.

Another remarkable fact that caught my attention: Autism was first identified in both the United States and Europe at almost exactly the same time. Child psychiatrist Leo Kanner published his landmark paper at Johns Hopkins University in Baltimore in 1943; pediatrician Hans Asperger published his -- about a slightly less severely affected group of children -- in Vienna in 1944. Cut off by a world war, neither knew of the other's work.

Coincidence, say the experts, who attribute the timing to improving diagnostic techniques in both countries. What else can the experts say, literally invested as they are in massively funded genetic research to find the presumed cause? If it's not a coincidence that autism arose simultaneously on separate continents, that suggests something happened in two places at once to trigger the disorder. And that would suggest genes are not the fundamental factor, though they certainly could be implicated in
making some children susceptible to whatever the new exposure was.

The first Age of Autism column in early 2005, titled "Donald T. and Fritz V.," made this point, noting that the first Austrian case report and the first American case report "were born within four months of each other, Fritz V. in June of 1933 and Donald T. that September." Because Kanner's kids became known as "autistic" and Asperger ' s as having "Asperger's disorder," the overwhelming commonalities have not been fully appreciated; Kanner ' s study of Donald and 10 other children was titled "Autistic Disturbances of Affective Contact," and Asperger called his study of Fritz and three other children "'Autistic Psychopathy' in Childhood."

At different times in different places, they were seeing the same remarkable disorder. These kids were all "on the spectrum," as we say today, and that raises a question I put this way in that first column: "Was it coincidence the first few cases of these strikingly similar disorders were identified at the same time, by the same term, in children born the same decade, by doctors thousands of miles apart? "Or, is it a clue to when and where autism started -- and why?

"The question reflects a huge, and hugely important, debate. If autistic children always existed in the same percentages but just were not formally classified until the 1940s, that would suggest better
diagnosis, not a troubling increase in the number of autistic children.

"If, however, autism had a clear beginning in the fairly recent past ... then the issue is very different. That would suggest something new caused those first autism and Asperger's cases ... something caused them to increase, and something is still causing them today." At that time, I had no clue about a possible connection. But now, after reporting and writing more than 100 Age of Autism columns over the past two years, I do.

The clue could be the simultaneous arrival of ethyl mercury -- but not, necessarily, in the vaccines that some parents blame for the huge rise in reported cases over the past two decades. What I have
learned is that this especially dangerous form of organic mercury also was used starting around 1930 in fungicides. Morris Kharasch, the same American chemist who patented its use in vaccines -- where it is
called thimerosal -- also pioneered its use as a seed disinfectant.

Remember, this type of mercury didn't exist in nature; it's man-made, and Kharasch is the man who made it marketable. Read more

The Age of Autism: Gluten Clue from Case 2

By Dan Olmsted

WASHINGTON, May 3 (UPI) -- Finding a treasure trove of documents about the family of one of the earliest cases of autism has led this column to offer two observations: Mercury may be associated with the disorder from the beginning, and cutting-edge research near the nation's capital may help explain why it was first discovered at Johns Hopkins University in nearby Baltimore.

There is another possible clue from that early case, and it bears directly on the observation by many parents that restrictive diets seem to improve autism symptoms in affected children.

Specifically, those parents have found that a so-called GF/CF diet -- one free of gluten-containing grains and casein-containing dairy products -- helps clear up both behavioral issues and physical maladies like disrupted intestinal tracks. The grains in question are cereals -- gluten is a protein in wheat, rye, barley and most oats.

What does that have to do with the information this column recently uncovered about Case 2 -- a child known only as Frederick W. in the original medical report on autism published in 1943?

Well, we identified his father as a prominent plant pathologist named Frederick L. Wellman, who at the time his son was born in 1936 was a senior scientist at the U.S. Agriculture Department's main research center in Beltsville, Md., a suburb of Washington and only about 30 miles from Hopkins.

Wellman was trying to stop fungi from killing plants, and his resume shows that he was working on fungicides at that point in his career -- including newly developed organic mercury compounds. We found this especially interesting because Wellman had sales brochures in his archive for fungicides made with ethyl mercury. That is the same species of organic mercury used in a vaccine preservative called thimerosal, which some parents and a minority of researchers blame for triggering the recent rise in reported cases of autism.

In the 1920s Morris Kharasch, an organic chemist at the University of Maryland adjacent to the Beltsville research center, filed a barrage of patents that paved the way for both compounds. His dual focus was evident in his "Who's Who" entry: "awarded patents along pharmaceutical lines, and treatment of fungus diseases of small grains."

Both thimerosal and ethyl mercury fungicide first came on the market about 1930; the first autism case in that original medical report dates from 1931. We also identified Cases 1 and 3 and found plausible connections to fungicide in those cases as well.

Of course, this is speculation, and some readers have understandably challenged it as highly hypothetical. And that is admittedly true -- these are not answers we're offering, but questions. For example: Would a review of those early cases find environmental links overlooked in the earliest reports? Does the idea that mercury might be associated with autism, but not necessarily via vaccines, suggest mercury could be a factor even now, after thimerosal has been removed from most pediatric vaccinations? There is no question our planet -- our air, our streams, our fish -- is increasingly mercury-toxic and, according to the Environmental Protection Agency, putting thousands of American children at risk of developmental disorders.

Those amount only to hypotheses -- but they are testable ones; my suggestion all along has been that reasonable tests have been ignored, perhaps even avoided. A classic example is whether autism is less prevalent in never-vaccinated Americans such as many of the Amish.

After I raised that issue and cited anecdotal and unscientific reports that it might in fact be, the critics howled -- but two U.S. representatives, a Democrat and a Republican, introduced a bill ordering the Department of Health and Human Services to find out.

So on to the diet question. Frederick L. Wellman's archive, at North Carolina State University, has brochures for those two ethyl mercury fungicides. The most interesting is New Improved Ceresan, which is for use on "wheat, oats, barley, rye, sorghums, millets and flax." Wheat, oats, barley, rye ... where have we seen that list before? In the gluten-free autism diet, that's where. "Gluten is a protein and is contained in foods, such as wheat, barley, rye and oats," according to autism.org. "At the present time, we do not know why the gluten/casein-free diet helps many autistic individuals." One theory is that they release opioid-like substances in the gut that can migrate to the brain.

Well, here's another hypothesis -- could some of those grains be grown in places where residual toxins -- ethyl mercury, say, but in fact any environmental toxin -- are getting into them and thus into our kids?

And if some child's body burden or susceptibility is already at the tipping point, could that aggravate or even induce physical and mental symptoms that go by the name of autism?

Sounds fantastical, but one thing we learned about mercury by researching Case 2 is that this stuff can stick around. A government study in the 1990s at Beltsville, where Frederick W.'s father was experimenting with mercury fungicides in the 1930s, found concentrations of mercury 2,000 times the U.S. average. And that was presumably decades after anyone messed with mercury there – mercury fungicides were phased out in the 1970s after scientists recognized their toxicity extended well beyond fungi.

This is speculative, yes. But so is the idea touted by serious scientists that autism is triggered by excessive "maleness" in the developing brain; so, for that matter, is the belief that autism is a genetic disorder with no environmental trigger at all.

by Jo Rafferty            Nevada Appeal News Service
May 17, 2007

Fourteen-year-old Jessica Vega went into the emergency room at Renown Regional Medical Center in Reno on Thursday night when she couldn't move her legs and her arms felt weak.

"Her legs are paralyzed, her arms are affected. She is very weak in her arms," said Tondra Vees a family friend. "She has to use a walker. Even with that, she can't get to the bathroom. She can't stand up at all."

Vees said the girl has been determined by her doctor to have Guillain-Barre syndrome, an acute, autoimmune condition that can lead to paralysis.

The girl, whose mother Rhonda Vega is a full-time teacher's aide at Carson Valley Middle School, received her first booster shot of the cervical cancer prevention vaccine Gardasil on May 2.

"According to her neurologist, that's what caused this," said Vees,

Nevada State Health Officer Dr. Bradford Lee said the Web sites the Nevada State Health Department checks don't list the girl's symptoms as a side-effect.

"We are aware of a report of an alleged side-effect," said Lee. "Based on the CDC's site and the manufacturer's site, this is not a side-effect of the vaccine."

Vees said the girl has been determined by her doctor to have Guillain-Barre syndrome, an acute, autoimmune condition that can lead to paralysis.

Vees said the girl was being moved to a rehabilitation center on Tuesday.

"Thankfully, since Thursday, it doesn't appear to be ending up in her respiratory system, although she's getting weaker," Vees said. "They were going to let her go home, but now she's not. I think they expect her to be in (rehabilitation) for a month or so."

Vees cites a Feb. 21 report on the National Vaccine Information Center Web site, nvic.org, in which NVIC president Barbara Loe Fisher states, "There are twice as many children collapsing and four times as many children experiencing tingling, numbness and loss of sensation after getting a Gardasil vaccination compared to those getting a TDAP (tetanus-diphtheria-acellular pertussis) vaccination. There have been reports of facial paralysis and Guillain-Barre syndrome."

Vees cites that according to nvic.org, the vaccine's manufacturer, Merck & Co., studied Gardasil in fewer than 1,200 girls younger than age 16 in "pre-licensure trials."

According to Vees, the girl had not received any other vaccines at the same time, and prior to Thursday was "healthy as a horse."

Public information officer Martha Framsted and Lee, both of the Nevada State Health Department, said Monday they check for vaccine information only from government-approved Web sites.

"We always try to go to the Web sites that have been scientifically proven," said Framsted. "I don't believe (the National Vaccine Information Center) is one of our federal partners."

The agencies the health department does check with before approving a vaccine are the Center for Disease Control and Prevention (www.cdc.gov), the manufacturer's Web site (in this case gardasil.com and merckvaccines.com) and with the Advisory Committee on Immunization Practices, the only entity in the federal government which can make recommendations regarding routine administration of vaccines, according to the CDC.

The Web site gardasil.com states that the only side effects are "pain, swelling, itching and redness at the injection site, fever, nausea and dizziness."

Neither Lee nor Framsted wanted to speculate on why the doctor would say the girl's paralysis was a side-effect of the vaccine.

According to Bonnie Dellner, the chief school nurse for the Douglas County School District, the normal cost for the three vaccinations of Gardasil is $500. The school district offers these vaccines at $15 each.

Dellner said the school had received no complaints after an April 29 immunization clinic at Douglas High School.

The U.S. Food and Drug Administration approved Gardasil on June 8. Gardasil is for girls and women ages 9 to 26. Gardasil is the only vaccine that may help guard against diseases caused by HPV, which may cause cervical cancer.

http://www.nevadaappeal.com/article/20070517/NEWS/105170090/0/FRONTPAGE

First I want to thank you all for your support. Due to all the feedback FOX
6 received, they did TWO more reports on autism. Three reports in
twenty-four hours is just amazing and you all made this happen.

Here's a run down of what took place yesterday.

7:30 am--Chantal Sicile Kira went down to the station to discuss the
previous night's story. Here's the video link of Chantal's discussion:
http://www.fox6.com/mediacenter/local.aspx?videoID=308053

1:00 pm--Kristine Lazar went into the station, on her day off, to follow up
on the story. She (as well as the station) received so many emails that the
news director told her to do several more autism stories. Kristine said,
"the emails were driving me to tears."

3:00 pm--While at OT with my son, FOX 6 calls my cell and says, "we need to
follow up on this story TONIGHT. TONIGHT. The response has been huge!"
6:00 pm--The Primer Family was interviewed at their home about biomedical
treatment. I went down to the station to talk about biomed also.

10:00 pm--Second story ran. Watch it here:
http://www.fox6.com/mediacenter/local.aspx?videoid=308232@video.fox6.com

These new reports never would have happened without the support of this
community. Thank you for helping get the message out that vaccines can harm
a subset a children and that these children can be treated medically.

FOX 6 has now put up a "discuss" link as forum for parents to express their
views. Please feel free to use it.
http://community.fox6.com/forums/1587352/ShowThread.aspx#1587352
Just remember your best manners. FOX 6 has a very positive opinion of our
community right now, I would hate for that to be tarnished.

And last but not least, here is the feedback link again. In case you want
to provide more feedback. It couldn't hurt.
http://www.fox6.com/content/feedback.aspx

Thank you all for everything,
Becky Estepp – TACA Coordinator San Diego & Parent Liaison

VACCINE-INDUCED AUTISM HEARINGS TO PRESENT SCIENCE SUPPORTING PARENTS’ CLAIMS
Government Lawyers To Rely Upon “Cigarette Science” Says NAA

Two announcements from National Autism Association

WASHINGTON, DC – Hearings are scheduled to begin next week in the U.S Federal Claims Court where over 4,800 parents have filed for compensation for their children who developed autism after exposure to infant vaccines.  A majority of those claims revolve around the use of thimerosal, a mercury-containing preservative. 

Parents claim that the science is on their side and agree with Robert F. Kennedy, Jr.’s opinion that the science against them amounts to “cigarette science” similar to the flimsy claims of the cigarette manufacturers from years ago.

The wealth of science backing a vaccine/autism link will go head-to-head with federal agencies that mandated the administration of mercury-containing vaccines to children and with the drug companies that produced them.  Parents have been especially wary of pharmaceutical/government ties ever since the mysterious insertion of a rider to the Homeland Security Act in 2002 which would have protected Eli Lilly from any liability resulting from their product, thimerosal. 

For parents like Lyn Redwood, RN, whose son received 125 times the Environmental Protection Agency’s allowable exposure to mercury at 2 months of age, the science is overwhelmingly supportive of a thimerosal-autism link.  After routine childhood vaccines, Mrs. Redwood’s son slowly regressed and was found to have toxic levels of mercury in his body.  According to Mrs. Redwood, “The only data supporting no evidence of harm are a handful of epidemiology studies conducted by Centers for Disease Control and Prevention and vaccine manufacturers.”

One such study performed by the CDC’s National Immunization Program was recently reviewed by the Department of Health and Human Services (HHS) which concluded that the CDC’s Vaccine Safety Datalink utilized in the investigation had several serious problems, “judged to reduce the usefulness of an ecologic study design using the VSD to address the potential association between thimerosal and the risk of autism spectrum disorders.”   

Published peer-reviewed clinical studies supporting parents’ claims include:

• the development of blood levels of mercury in children after vaccination that meet the diagnostic criteria for mercury poisoning by the CDC’s own definition
• vaccine levels of mercury result in significant mercury accumulation in the brain
• elevated levels of mercury in children diagnosed with autism who are unable to effectively eliminate the neurotoxin following exposure

A three-year investigation by the Government Reform Committee concluded in May of 2003: “Thimerosal used as a preservative in vaccines is likely related to the autism epidemic.  This epidemic in all probability may have been prevented or curtailed had the FDA not been asleep at the switch regarding the lack of safety data regarding injected thimerosal and the sharp rise of infant exposure to this known neurotoxin.   Our public health agencies' failure to act is indicative of institutional malfeasance for self-protection and misplaced protectionism of the pharmaceutical industry.”

For more information, visit www.nationalautism.org

In this presentation, Dr. Grover will engage audience participation to discuss the ways in which mental health professionals can interface with school districts to help students with behavior, attention, and learning problems succeed in school, both academically and socially. This event will function as an open question and answer session.

Dr. Geeta Grover is a Developmental and Behavioral Pediatrician. Her practice specializes in the evaluation and management of children and adolescents with ADHD, Learning Disabilities and other school related concerns. Dr. Grover has a private practice in Laguna Niguel as well as being the Medical Director of Developmental and Behavioral Pediatrics at CHOC. She is the co-director of CHOCO's Reading Club (a pediatric early literacy program based in the general pediatric outpatient clinics at CHOC) and coordinator of the rotation in Developmental and Behavioral Pediatrics for the CHOC Pediatric Residency Program. Dr. Grover attended medical school at the University of California, Irvine College of Medicine. She completed her internship, residency and fellowship in Ambulatory Pediatrics at Harbor/UCLA Medical Center in Torrance. She is board certified in Pediatrics and Developmental-Behavioral Pediatrics.

Wednesday, June 13th, 2007
7:00pm – 9:00pm
UCI Child Development Center School Trailer
19262 Jamboree Road, Irvine 92612
(between Birch and Fairchild, across the street from Starbucks)
(949) 824 – ADHD (2343)

CHADD is a parent support group that provides a forum for continuing education for parents and professionals interested in learning more about ADD and ADHD in children and adults, CHADD also helps assure that children are provided with the best educational experiences and resources available for their needs. For more information on CHADD, please call Barbara Henry at (714) 630-5214 or visit our website at www.chadd.org

Foothill Autism Alliance Family Resource Meeting, Adaptive Recreation Programs for Kids and Adults -- fun and exercise for all ages and abilities!  Come hear speakers from local Parks & Rec, Special Olympics, Rose Bowl aquatics program, and the YMCA's "Y-Spirit" program.  818-662-8847

June 13 Pasadena 7-9:30 p.m. - free!

PCDA, 620 North Lake Ave. 2nd floor (just north of the 210 fwy)
Twyla Ramos www.foothillautism.org info@foothillautism.org

Learn about how Lyme disease could be the infection which is hindering your child’s recovery from autism. Dr. Charles Ray Jones, Lee Cowden, M.D., Robert Bransfield, M.D., Doris Rapp, M.D., Mady Hornig, Anju Usman, M.D. & many more fabulous speakers.

June 22-24 Irvine $175 for the two-day conference plus pre-conference homeopathy workshop on Friday night. Hyatt Regency Hotel - Tami Duncan www.liafoundation.org Tamiduncan@aol.com

Wrightslaw special education law and advocacy programs are designed to meet the needs of parents, advocates, educators, attorneys, and health care providers who represent children with disabilities.

July 5-6 Los Angeles - Special Education Law and Advocacy Training sponsored by Klinefelter Syndrome and Associates. Wayne Steedman and Pat Howey

THE HELP GROUP - UCLA SEMEL INSTITUTE

ON ASPERGER’ S DISORDER: SUMMER 2007

Best Practices in Education

An intensive three-day, interactive workshop for educators and clinicians on best practices in educating children and adolescents with Asperger’s Disorder.

Wednesday July 18th - Friday July 20th

The Help Group Sherman Oaks Campus, Sherman Oaks, California

THE INSTITUTE IS DESIGNED FOR

• Regular Education Teachers
• Psychologists
• Educational Therapists
• Occupational Therapists
• Counselors
• Inclusion Specialists
• Special Education Teachers
• School Administrators
• Speech & Language Pathologists

Conference - Cutting Edge Treatment in Autism, Important New Discoveries Relevant to Autism Recovery

July 21 Riverside 8am-6pm $99 per person $169 per couple

Soma's RPM Workshop - Soma Mukhopadhyay will conduct 1:1 Rapid Prompting Method instructional sessions with local students. 512-465-9595

August 9-11 Irvine - HALO information@halo-soma.org