FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

PUBLIC HEALTH

* Exposed: MMR Experts' Cash Link To Vaccine Firms

* Patient Privacy Issues at Heart of Vaccine Safety Inquiry

EDUCATION

* Overwhelmed by Autism Schools & Parents Grapple With Alarming Rise In Malady

TREATMENT

* Nevada FEAT Works To Help Autistic Children Maximize Their Potential

FUNDRAISER

* Unlocking Autism and Rascal Flatts are coming to Barre, Vermont!

Exposed: MMR Experts' Cash Link To Vaccine Firms

[By Camillo Fracassini cfracassini@scotlandonsunday.com.]

New evidence of the financial links between the makers of the controversial MMR vaccine and experts charged with assessing its safety has been uncovered by a Scotland on Sunday investigation.

We can reveal that the chairman of the expert group set up by the executive to investigate the jab, the Very Reverend Graham Forbes, is linked to one of the manufacturers of the vaccine, GlaxoSmithKline (GSK), through his church.

Another member of his committee, Professor Lawrence Weaver, also has shares in GSK through an investment plan.

Four members of the group are already known to have links to the drug companies through shares or academic funding. Scotland on Sunday’s new revelations mean six of the 18-strong group have connections.

Last week, the group published its long-awaited report on the MMR vaccine, and controversially recommended that Scottish parents should not be offered single jabs as an alternative to the triple vaccine.

Scotland on Sunday can also reveal that a Scottish-led £500,000 research programme into possible links between MMR, autism and bowel disease is being opposed by an anonymous scientific advisor who admits to being paid by another manufacturer of the vaccine.

Scottish scientists fear the project - which would be the biggest ever investigation into links between MMR and autism - has been put at risk by the submission to the Medical Research Council funding body. The unnamed scientist describes the planned work as "fringe medicine".

The expert group, chaired by Forbes, was set up last August by the Scottish Executive to provide a definitive assessment of the safety of the measles, mumps and rubella vaccine. It followed concern among parents about the jab and a slump in the vaccination rate.

Now, official documents seen by Scotland on Sunday have revealed that Forbes, who is Provost of St Mary’s Episcopal Cathedral in Edinburgh, has links to the controversial vaccine. Money from the cathedral’s endowment fund has been invested in GSK.

The documents also show that respected academic Professor Lawrence Weaver, who is head of the department of child health at Glasgow University, has links to the same drugs company.

Shares in GSK were bought on behalf of Weaver as part of a PEP investment plan.

When Scotland on Sunday approached Forbes and Weaver, they insisted they had declared their investments soon after the expert group was set up. Both denied they had been influenced by the holdings.

Further evidence connecting pharmaceutical firms to expert advisors has emerged in a document sent to the Medical Research Council (MRC), which has been obtained by Scotland on Sunday.

In it, an unnamed scientist, who admits receiving money for acting as a an expert witness on behalf of MMR firm Merck, presses the funding body not to give a grant to the pioneering Scottish-based research project aiming to examine links between the vaccine, autism and bowel disease.

The study, due to begin in October, will not be able to go ahead without MRC funding.

Researchers hope to examine the theory that the measles virus from the MMR vaccine is causing autism and bowel disorders in children. It is the theory which first ignited the debate over the safety of the combined measles, mumps and rubella vaccine.

But in the letter to the MRC, in response to a request to ‘referee’ the application, the academic says: "The theory is entirely discredited and is fringe medicine, carried out in private laboratories, and published in fringe journals."

The scientist, who admits his link to Merck, continues: "One therefore has to ask if it is the MRC’s remit to refute fringe notions on which there is no recent published data from the proponents of the controversial hypothesis."

One academic involved in the planned research said the scientist’s recommendations had put the project at risk.

The academic, who asked not to be named, said: "I am worried that this may sway the MRC and put our research at risk.

"This person is trying their utmost to block our research without providing any valid scientific reasons. They are saying they do not want the project to go ahead, full stop, because it is quack medicine. This is complete nonsense."

The study would examine the guts of 1,000 children - half of them autistic - for the presence of the measles virus and gut damage.

An MRC spokeswoman said: "Grant applications are looked at by independent reviewers in the field. We take these comments into account when we make a funding decision."

Bill Welsh, chairman of the campaign group Action Against Autism, said he was alarmed by the extent of financial links between scientific experts and the MMR firms.

He said: "Inappropriate financial links have scarred the whole MMR debate."

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Patient Privacy Issues at Heart of Vaccine Safety Inquiry Burton looking into autism might subpoena a database that contains medical records.

An aggressive effort by Rep. Dan Burton (R-Ind.) to investigate whether childhood vaccines can cause autism has set up a political showdown over the medical privacy of 8 million HMO patients, more than 6 million of them Californians.

Scientists said Thursday that the public-private research partnership set up to protect all Americans from deadly diseases and bioterrorist attack could be undermined if Burton subpoenaed the project's huge database.

Rep. Henry A. Waxman (D-Los Angeles) urged Burton in a letter Thursday "to reverse course." But Burton made no such promise. "While I am not poised to issue a subpoena at this time, I will not foreclose my right to do so at some point if events warrant such action," he said in a response.

Burton's letter criticized the vaccine project's methods. He said he was waiting to see if the "research procedures" to be used in a compromise offered by the Centers for Disease Control and Prevention would be acceptable.

The CDC has said it could allow independent researchers to analyze the project's data at the National Center for Health Statistics in a way that would not violate patient confidentiality. The partnership is called the Vaccine Safety Datalink Project.

Burton, who has a grandchild with autism, has conducted numerous hearings on vaccine safety as chairman of the House Government Reform Committee. Vaccine safety researchers and government scientists said Burton's continued involvement could have an "incredibly broad impact" on public health.

"These issues need to be resolved in the scientific arena, not the political arena," said Dr. Neal Halsey, director of the Institute for Vaccine Safety at Johns Hopkins University in Baltimore.

Burton first asked the CDC in November 2000 to turn over the vaccine project's records.

CDC officials refused, citing the strict privacy agreements it has with eight large health-maintenance organizations and the HMOs' confidentiality contracts with their members.

Since 1991, the project has used the HMOs' computerized medical records to watch for vaccine-related health problems and improve the safety of the 12 vaccines, delivered in 20 shots, administered to most American children by their second birthday.

Large databases have always been needed for public health research, "but with Sept. 11 and the threat of bioterrorism and the need for vaccines [for] anthrax and smallpox, it's even more critical," said Dr. Steven Black, co-director of the Kaiser Permanente Vaccine Study Center in Oakland.

Burton's campaign has set up "a lose-lose situation for the country," said Dr. Robert Chen, chief of vaccine safety and development activity for the CDC's National Immunization Program. If the confidentiality of the patient records is breached, he said, HMOs would no longer participate in the vaccine safety project and public health would suffer.

Burton first rejected the CDC's offer to set up an outside, confidential process to allow independent researchers to analyze its data.

In February, almost a year after the private Institute of Medicine found no link between autism and the measles-mumps-rubella vaccine, Burton's committee drafted a subpoena for "all records collected" by the CDC's vaccine safety project. The CDC and the National Institutes of Health have begun their own studies to determine if the MMR vaccine can sometimes cause autism, a severe and increasingly common developmental disorder.

While autism's cause is unknown, most scientists believe there is a genetic basis for the disability, which afflicts about 1 million American children and adults.

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Overwhelmed by Autism Schools & Parents Grapple With Alarming Rise In Malady

When Kim Russell started out as a special education teacher in San Francisco, she looked around the room and saw four kids in wheelchairs, another with a walker, others who were diagnosed as mentally retarded. One child had a neurological disorder called autism.

But that was seven years ago, still early in the story of a phenomenon now spanning the country. Today, almost all her students at Yick Wo Elementary School -- six out of seven -- are autistic.

And there are eight other classrooms in the district with a curriculum designed for children diagnosed with autism -- kids often set apart by their struggle to communicate, their social awkwardness, self-stimulating habits and obsessive interests.

The disorder has been reported in record numbers of kids nationwide. In California, it's the fastest growing segment in the state's developmental disability system.

"I have a parent who calls every week and says, 'Is there room yet? Is there room yet?' " said Russell. "I have to tell her, 'No, maybe next year.' "

But that already promises to be another bumper year -- 22 autistic preschool kids identified so far who will need kindergarten placement. And San Francisco, which now has an autism curriculum specialist and plans to add another one, is not alone.

The small Berryessa school district in San Jose, with about 8,000 students, has five classes of autistic kids this year and next fall will add a sixth. Specialists there have had so much practice, they've joined with parents to set up a nonprofit that has already trained more than 650 other teachers outside the district.

Donald Jolly, the head of special education in the Sunnyvale school district, didn't want to say which campus has a special class for kids with Asperger's syndrome, a milder relative of autism, because it's full and he doesn't want parents going to the school and "hunting around."

"We're starting to feel overwhelmed as a system," said Bob Baldo, executive director of the Association of Regional Center Agencies, which represents state treatment centers for the disabled. "The long-term implications are absolutely staggering as a state and as a nation."

The number of autistic clients at centers run by the state Department of Developmental Services (DDS) increased 273 percent from 1987 to 1998. In the four years since then, the cases have close to doubled again, and the latest quarterly numbers show they are continuing to explode at a record rate. Two- thirds are children under age 13.

And those figures don't even include the growing number of kids diagnosed with Asperger's syndrome. There is no centralized system for counting those cases, but school districts and therapists all say they're being inundated with Asperger's children as well.

Mysterious Causes

What parents find most alarming is that no one agrees on why more children are being diagnosed with these maladies. No one believes anymore, as they did until the 1960s, that autism is caused by "refrigerator mothers" who are distant and rejecting.

But newer theories abound, each with its own adamant proponents: a component in certain childhood vaccines, metabolic disturbances or environmental toxins. Or the increase might largely be due to earlier and different diagnostic criteria or a combinations of all these reasons. The only point of consensus is that heredity appears to play a role.

A state research team, using a $3.5 million grant from the federal Centers for Disease Prevention and Control, will spend five years investigating the avalanche of new cases at DDS regional centers in six Bay Area counties.

At the same time, the state has asked researchers at UC Davis to present legislators in June with their own report on the upsurge.

"It appears there are more kids now than there ever were, and it's not because everyone has seen 'Rain Man,' " said Dr. Robert Byrd, lead researcher on the study at the university's Medical Investigation of Neuro-Developmental Disorders Institute, founded by parents of autistic kids.

It was the 1988 Dustin Hoffman movie that gave most people their first look, albeit a sentimental one, at the disorder.

The movie showed that someone with autism might be able to do things like memorize the phone book, play piano sonatas by heart or know the scientific name of every dinosaur, but be perplexed by simple questions such as "How are you?"

What "Rain Man" didn't show was the wide spectrum of symptoms and behaviors that continue to confound researchers. Some autistic kids are precocious early,

then lose skills; others never talk or talk obsessively. They're typically hypersensitive to outside stimulation and may learn to soothe themselves by clapping hands, humming or merely retreating into silence.

But autism was around long before "Rain Man." Leo Kanner, a child psychiatrist at Johns Hopkins University, described it in a 1943 paper that discussed the "fascinating peculiarities" he'd seen that didn't fit any existing categories. German researcher Hans Asperger published his research around the same time, but the disorder bearing his name wasn't widely used -- by parents or therapists -- until recently.

Long Waits, High Costs For Help

With autism numbers soaring, parents have been scrambling for information and state-of-the-art therapies. They are finding months-long waiting lists for testing and therapy at clinics in Marin, Santa Clara and San Francisco counties.

Faced with delays, they are spending time and savings fighting for services they believe are crucial. Many families struggle to pay for a popular behavioral therapy pioneered by UCLA researcher Ivar Lovaas, a one-on-one treatment that can take up to 40 hours a week.

One Marin family has spent $100,000 a year on behavioral and other therapy and a home aide. A mother in San Jose acted as her son's full-time school aide until she could get funding for one at his school. A San Francisco couple say they've taken legal action against the school district at least three times to get their 10-year-old daughter into what they consider the right placement.

"Like every other family, we have to fight for what we get," said Eileen Attridge. "My husband is a lawyer, so he handled the hearings. He has an 'Esquire' after his name, and that's all that matters."

Deborah McKnight, interim director of special education in San Francisco, deals with anxious parents on a daily basis. Schools rely on diagnoses from their own testers, outside clinics or DDS regional placement centers to develop individual plans for autistic kids.

The regional centers and school districts will pay for treatment based on the evaluation's recommendations. But those sometimes don't match what parents think is best, particularly in light of what many experts believe is important -- early treatment before kids are school-age.

"People do research on the Internet and they are experts on what's available," said Santi Rogers, head of the San Andreas Regional Center in San Jose, one of 21 centers statewide that provide services, testing and referral. "There may be Brand X, Y and Z and they want X. We're not cynical, but we have to understand what's out there and what will work."

There is a three-month wait for testing at Langley Porter Psychiatric Institute's autism clinic at UCSF. By the time parents get there, their children may have been to other doctors and specialists. Dr. Bryna Siegel, head of the clinic and author of a well-known resource book, "The World of the Autistic Child," is part of a team that evaluates kids.

Changing Guidelines, Labels

She doesn't believe what she's seeing is a true epidemic. Rather, she says, kids are getting tested and diagnosed earlier using newer guidelines in the Diagnostic and Statistical Manual -- the gold standard of psychiatric diagnosing. The manual, revised in 1987, describes 16 specific areas of development to rate for autism.

But many parents don't think that's the whole reason. Rick Rollens, who co-founded the MIND Institute, said his son Russell began life in 1991 as a normal robust infant, then started slipping into autism after a routine vaccination at 7 months. The condition worsened later when Russell suffered severe digestive problems after his first measles, mumps and rubella shot.

After taking Russell to countless doctors, Rollens became convinced his son had vaccine-induced autism. The co-founder of Families for Early Autism Treatment, which now has an online newsletter reaching 20,000 people, Rollens said his story "is not unique," although he thinks there is probably more than one cause of autism.

Siegel said the vaccine theory is hard to prove because autistic children often learn to walk and talk normally, only to lose those skills in the first few years of life.

Many of the children she sees have a collection of symptoms, some of them fitting autism and others resembling attention-deficit or obsessive-compulsive disorders or mental retardation, she said. Twenty years ago, they might have received different primary diagnoses, she said.

"As far as social attitudes, autism is perceived with less stigma than mental retardation," she said. "When I started running an autism clinic in 1983, the residents I was training didn't want to tell parents their kid was autistic, but it was OK to tell them the kid was retarded. Now residents do just the opposite."

Sometimes, Siegel said, parents want the autism diagnosis because they feel their children will get better, earlier services.

"What sounds good about mental retardation?" she said. "Parents think that a mentally retarded kid can't learn anything, which isn't true."

Siegel thinks labels are less important than the treatment plan a child gets. Often symptoms don't fit a pattern and need a variety of therapies. But whatever the diagnosis, she knows how hard it is for parents.

"You don't expect to have a kid with a handicap," said Tobie Shapiro of Berkeley, whose 15-year-old son, Meyshe, taught himself to read and write at age 2 but didn't learn to talk. "I didn't know anything about a whole variety of things that can go wrong."

Shapiro, like many researchers and parents, believes genetics play a role in autism. It's one of the theories that the CDC-sponsored local study will investigate.

Researchers and parents alike have noted that the same traits that make for engineering or computer whizzes -- brilliance in one specific area such as spatial or math reasoning and intense inward focus -- show up in people with autism.

"I've seen a lot of physicists and mathematicians who are on the

(autism) spectrum," said Shapiro.

Shapiro, in frustration, has turned to home-schooling her son, but other families are still clamoring for school help. And districts are finding that training teachers and assembling resources to deal with escalating numbers of autistic kids is a laborious, expensive process.

Learning Through Routines

San Francisco -- where younger kids are in autistic-focused classrooms, regular special education and mainstream classes -- is scrambling to start classes for kids beyond elementary school.

Russell, who has been to training classes and seminars, relies on predictable, set routines at Yick Wo Elementary. Each morning students take their name tags from a placard near the front door and place them on an activity board in the front of the room, moving them to different work stations during the day.

And each kid has a book of pictures that are attached to pages with Velcro. They use the picture clues to work on language, pointing to what they want -- a song, a snack or a toy -- before saying it.

Russell also uses behavioral training, a set of well-defined small tasks, with rewards for completing them. One girl has pictures of a doll and a favorite book at her desk, rewards she'll get to pick when she finishes alphabet work.

All students get individual speech therapy and spend time playing with kids from regular classes in supervised play groups.

Some, like Max Dycus, 7, get other individual treatment. His education plan calls for music therapy an hour a week. In a small room, the therapist sings to encourage Max to speak and look him in the eye.

Max, who can zip around the Internet in search of Thomas the Tank engine sites and use a remote control like a pro, has little interest in socializing. But he smiles ecstatically when he gets a chance to jump to music on a small trampoline.

"I think we're on the right road," said his mother, Melinda Lee. "We've had good luck, but it's not really luck. It's been hours and hours on the telephone. My husband practically gave up his job for a year."

One day recently, a girl in the class was happily playing in a plastic playhouse when she stepped in a puddle and began to shriek and wave her arms. An aide calmly walked over, took the girl's hand and said, "Tell me sock off, sock off."

The girl sat down on a bench, held out her foot and repeated the phrase. The aide removed the sock and the girl stopped crying, resolution of one small problem, part of what will be many that day.

"I have visions for these kids, where they'll be in 10 or 15 years," said Russell, ever hopeful, though she knows there is no recognized cure for autism.

"One loves to skate, and she'll be an Olympic gold medalist. One will be a book reviewer. One will work in a store because she loves shopping bags, especially the handles. One will be at Microsoft. He'll be rich and maybe he'll say, "I want to go back and take care of my teacher.' "

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Autism On The Rise

Changes from 1998 to 2002 in numbers of people with autism served by centers run by the state Department of Developmental Services.

Regional center 1998(x) 2002(y)

Alta 400 683

Central Valley 150 361

East Bay 606 1,087

E. Los Angeles 443 976

Far Northern 125 217

Golden Gate 371 499

Harbor 639 1,113

Inland 568 1,195

Kern 141 262

Lanterman 418 842

North Bay 215 350

N. Los Angeles 742 1,746

Orange 670 1,621

Redwood Coast 76 103

San Andreas 360 666

San Diego 609 1,186

San Gab/Pomona 581 937

S. Central L.A. 549 874

Tri-Counties 352 725

Valley Mountain 153 373

Westside 613 986

Statewide total 8,781 16,802

(x) As of Jan. 7,1998

(y) As of Jan. 3, 2002

Source: state Department of Developmental Services

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Nevada FEAT Works To Help Autistic Children Maximize Their Potential Families for Effective Autism Treatment sponsors support groups, offers a lending library and lobbies Legislature

Southern Nevada families with an autistic child have a local resource in Families for Effective Autism Treatment.

The group holds monthly support group meetings, operates a lending library of parent-teacher materials and lobbies public agencies for programs to serve this special population. It also assists parents with newly diagnosed children.

The 6-year-old nonprofit organization recently moved into its first official quarters at 408 S. Jones Blvd.

Autism, which also is called autism spectrum disorder, is a neurological disability that usually surfaces by the time a child turns 3. Autistic individuals have difficulty with verbal and nonverbal communication, social interaction and imaginative activities, according to literature from the local organization, which also goes by the shortened name, FEAT.

FEAT lobbied the Legislature in 2001 to establish two treatment centers in Nevada, but the bill was shelved because of a state budget crunch.

Early diagnosis, coupled with early intervention, can improve the outcomes for people with autism. FEAT pushes for better training of professionals, including pediatricians, to the warning signs of autism. Sometimes it is incorrectly confused with mental retardation or behavior disorders

"If you can't identify the kids early enough, then you can't treat them early. And if you can't treat them early, you can't get recovered kids," says Michelle Tombari, a parent who is FEAT's director of communications.

Tombari and her husband, David Grant, grew alarmed when their younger child, Alden, at 19 months, "wouldn't respond to his name when we called his name. He had no eye contact. He had repetitive behaviors, though I didn't know the name for it then. He would spin. He would flap his hands."

They took Alden to a pediatric neurologist who made the diagnosis.

"We were `lucky' he was serious enough to get a diagnosis," Tombari recalls. "A lot of times they put you off and say, `Let's wait till he's 3 and see what he's doing.' "

On the downside, Tombari says even the neurologist took a dim view of Alden's chances for effective treatment: "He said, `Bring him back when he's self-injurious and we'll put him on medication.' "

But after five years of intensive home therapy, which has been supervised by the University of California, Los Angeles, Alden is able to attend public school, Tombari happily reports. "He went from not talking at all. He had no words. Now he's got spontaneous communication."

FEAT hopes to create a brochure to be included in packets given by hospitals to new birth mothers. It also wants to set up a postcard system for pediatricians to encourage clients to return for an 18-month checkup if a parent observes any early signs of autism.

The federal Centers for Disease Control and Prevention reported in a recent New Jersey study that the incidence rate of autism may be as high as 1 child in every 149 children. Previously, Congress reported the rate of children diagnosed with autism has grown from 1 in 10,000 in 1989 to 1 in 500 in 1999.

"California is reporting a 273 percent increase in the diagnosis of autism in the last 11 years. Maryland reported a 513 percent rise between 1993 and 1998, and several dozen other states have reported increases of 300 percent or more," according to FEAT's research summary.

Nevada has instituted no system to track autism in its residents, FEAT notes. The group would like to be funded to serve as the autism data clearinghouse for Nevada.

Ideally, once autism is diagnosed, a child should undergo a so-called Applied Behavior Analysis program that is custom-designed to overcome his or her developmental delays. FEAT's lending library includes stimuli objects that can be incorporated into an Applied Behavior Analysis program.

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Unlocking Autism and Rascal Flatts are coming to Barre, Vermont!

Join UA for a day of autism awareness and great fun in Barre, Vermont on June 22nd. At 8pm that night in the Barre Opera House, RASCAL FLATTS, the hot new country artists that sing "Prayin' for Daylight," "This Everyday Love" and "I'm Movin' On" are performing in a benefit concert to raise money for Unlocking Autism!

Tickets are on sale now at the Barre Opera House box office and can be purchased by calling 802-476-8188.

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Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy

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