SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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Tuesday, January 14, 2003

AWARENESS

* Lessons From the Little Professor

Asperger's Syndrome: 'Wired Differently -- Not Defectively'

* Catching up With Autism

ADVOCACY

* Lilly Vaccine Issue Will Get Front-Door Hearing It Deserves

* Frist in Unusual Deal to Reverse Vaccine-Liability Decision

A Kinder look at Frist

* The Victim Friendly National Childhood Vaccine Injury Compensation Act:

You've Got to Be Kidding!

SAR AUTISM RESOURCES

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AWARENESS

Lessons From the Little Professor

Asperger's Syndrome: 'Wired Differently -- Not Defectively'

'More than half the moms said they found the diagnosis on the Internet first -- then took it to the doctors.'

"I've never seen a 2-year-old with an ability to concentrate like David," our day care provider told us when our son was little. "He's so smart, it's almost scary. He concentrates so hard on what he's doing that you can't distract him from it." Unfortunately, that meant that when she tried to get him to do anything else -- especially art projects -- he'd pitch a long, loud fit.

That wasn't news to me and my husband. Our son had definite opinions and interests from the time he was an infant. Only a certain extra-soft silicone nipple on his bottle, no matter how hungry he was. Either the silver rattle or the red-white-and-black one, but no others. But he could stare at his book of black-and-white line drawings all day, even at 8 weeks old.

As David grew older, he would both baffle and amaze us -- and those around us. At 3, he knew by heart the license plate numbers of all our neighbors within a two-block radius. By 4, he'd memorized detailed plot lines from books and videos, and would recite them -- over and over and over again. Halfway through kindergarten, David could read as well as many kids in the upper grades.

But our brilliant little boy could be difficult as well. Meltdowns were a fact of life. Hours of inconsolable crying as an infant evolved into horrendous temper tantrums as a toddler and preschooler. Every child has tantrums, but David's were longer and more extreme than most, and seemed to come at the tiniest provocation: Turning off a video that he had already seen a dozen times; giving him the red sippy cup when he wanted the blue one; having to walk down the block when it was too sunny outside; trying to coax/cajole/force him to eat any food that wasn't on the very short list of what he considered edible.

Advice from child care experts (reinforce his good behavior and ignore the bad) didn't work. Advice from family (give him a good swat on the behind when he acts up) only led to his adding hitting and kicking to his tantrum repertoire. Sometimes it felt like we were walking on eggshells, trying to avoid the many things that would set him off.

It wasn't David's tantrums, though, that kept him from making friends. He just wasn't particularly interested in other kids. Oh, he'd sometimes find one other child whom he'd build a relationship with and be fiercely dedicated to, but he could be in the same day care class with 10 kids for two years and not learn their names.

He couldn't be bothered, unless they wanted to listen to him talk about Superman (or another topic of the moment) for hours on end, and allow him to dictate exactly what game they'd play. Usually the game involved action figures, and David would have to script the entire process, typically with dialogue lifted from a comic book.

David's pediatricians kept saying he was developing normally -- but then, as their practice grew, we never seemed to see the same doctor two times in a row, so how could they really evaluate his problems? If only we'd known then: David was exhibiting textbook Asperger's symptoms.

A Brain Wired Differently

Psychologist Tony Attwood, considered one of the top experts in the field, likes to describe Asperger's as "having a brain that's wired differently -- not defectively."

That's more than just an analogy: Last fall, London scientists published findings that showed there are significant differences in the connectivity of nerve cells in the brains of people with Asperger's. The more severe the symptoms, the more abnormal the MRI scans.

By definition, people with Asperger's, which is considered a form of high-function autism, are of at least normal intelligence. Many, like my son, are gifted. But they act, and interact, differently from their peers. Typical symptoms include: intense interest in one or two objects; abnormal speech content, often with very advanced vocabulary; trouble interacting with peers; repeating certain activities; and resisting change in routine.

The different wiring underlying the condition, says Attwood, whose book "Asperger's Syndrome" (Jessica Kingsley Publishers, 1998) has sold more than 150,000 copies, means that people with Asperger's are "going to have difficulties as children in making friends, in reading body language and in the art of conversation. They can be somewhat pedantic and poorly organized. But they may have a special interest in a particular area, with encyclopedic knowledge and a lot of skills that are self-taught.

"Some have sensory problems, that they are upset by certain sounds or textures. And some can be a bit clumsy for catching and running skills. But they can have a very original way of thinking, often combined with a dazzling memory for facts and information."

That means that some things the rest of us take for granted, such as the social "skills" of reading a person's facial expression or body language, may have to be taught to an "aspie," as many in the Asperger's community call themselves.

On the other hand, that deficit is often balanced with intuitive abilities in areas such as science or art that are beyond most of us "neurotypicals." Speculation is that many of the world's great thinkers may have had Asperger's: Thomas Jefferson, Wolfgang Amadeus Mozart, even Bill Gates -- all brilliant, determined thinkers who may have obsessed over their particular areas of interest while ignoring social niceties.

The high intelligence, technical abilities and impressive vocabularies of many aspies have led to several nicknames for the disorder: Geek Syndrome, Nerd Syndrome, Little Professor Syndrome. But at a December conference in Richmond attended by more than 300 parents and teachers of Asperger's kids, Attwood suggested another name: "Frank Sinatra Syndrome": As in, "I Do It My Way."

The Little Prof at School

David most definitely has to do things his way -- and unfortunately, that's not always the teacher's way.

At Montessori school, while other children happily moved from station to station, David took to wandering the perimeter of the classroom -- all day, if he could get away with it -- absorbed in his thoughts.

Writing with a pencil or crayon "hurt," and at age 5 he still wasn't predominantly right-or left-handed. At recess, he complained that the other children hit him, but his teacher said it was usually minor, accidental brushes against him.

At the recommendation of a social worker friend, we took David to an occupational therapist to be evaluated for sensory integration problems. The

diagnosis: David had sensory defensiveness -- an over-sensitivity to light, noise, tastes, smells and textures -- along with motor coordination problems.

A year of occupational therapy tamed David's tantrums to a large degree, and day-to-day life became less stressful for all of us. Transferring him into a public school -- where there was more structure and less emphasis on sensory activities than in Montessori -- helped, too.

But sensory integration wasn't "the" answer we'd hoped for. David still wasn't connecting with other kids (the ones he called "best friends" were just other kids on the block who smiled and said hello to him), and life at school was continuing to deteriorate.

By first grade, David could tell you endless complex stories about superheroes traveling through "inter-dimensional portals." But he'd hide under his desk and cry when given an assignment to write three sentences about his favorite pet.

Web Diagnosis

When David began developing tics -- first an odd blinking, then a nose scrunching, and soon an occasional funny walk (step, hop, step, pause) that he said he "couldn't help" -- the pediatrician referred us to a neurologist at Children's Hospital in the District. Because a tic disorder isn't life-threatening, we were faced with a several-month wait for an evaluation.

In the meantime, I decided to do more research on my own. I had already learned a lot about sensory integration, but could the tics be connected in some way? I was floored when a quick search for "sensory integration and tics" produced more than 2,500 hits -- most on sites related to autism or a related disorder I'd never heard of: Asperger's syndrome.

It would be seven months before we could get in to see a psychiatrist for an official diagnosis, but my husband and I knew as soon as we read the list of symptoms that we'd found our answer.

That approach wasn't in any way unique. At a recent parent support group meeting I attended, more than half the moms there said they found the diagnosis on the Internet first -- then took it to the doctors.

I'll Have the Usual

Ironically, one of the things that sets Asperger's kids apart initially is their insistence on sameness. Many Asperger's kids, for example, can't tolerate any changes in routine: They want the same clothes every day, the same food at every meal, and pity the poor teacher who has to change the class schedule without notice. Mess with their agendas and these kids can have major meltdowns.

Actually, eating problems can come both from the aspie's desire for sameness and from sensory sensitivities. An amazing 10-year-old boy from England, Kenneth Hall, wrote a book about what it is like to be a child with the condition: "Asperger Syndrome, the Universe and Everything" (Jessica Kingsley Publishers, 2001). In it, he says: "Another unusual thing about me is that I definitely can't take most foods. Eating is one of my biggest difficulties. I can't explain why I have this difficulty, but for me this is the worst thing about [Asperger's syndrome]. . . . Most food has a horrible texture. Like mashed potato, for example. It is like paper which has been soaked in water. It feels like papier-mâché which might go into every crevice of my mouth like a sculpture." What Kenneth likes to eat most is Red Leicester cheese in a bowl, which he has every day for lunch. He likes to grate it himself, so he can be sure it will be exactly the right consistency.

The good news for parents of aspies -- many of whom get criticized by well-meaning relatives for not giving the child a varied diet -- is that Attwood says many aspies outgrow their eating difficulties, at least to some degree.

Literally Speaking

Two weeks before Christmas this year, David told me he had to go out with his dad for a little while and I couldn't come. When I asked him where they were going, he didn't say, "It's a secret." Instead, my 7-year-old told me "I'm sorry, Mom, but I'm just not at liberty to divulge that information at this time."

That kind of comment from a child tends to charm the heck out of grownups, but it can baffle other kids.

Words, for people with Asperger's, have very literal meanings. Author and adult aspie Liane Holliday Willey -- who has a doctorate in education with a specialty in psycholinguistics and learning-style differences -- says that even after years of therapy, she still often can't tell whether someone is joking with her or teasing her or angry with her.

"I'm really not quite clear with words, what the intent is. I can't tell if they're being straightforward with me. If someone asks me 'How are you doing today?', I'm going to tell them. And I've been told over and over again, 'They don't really care.' " But that doesn't make sense to a person with Asperger's. Why would someone ask a question they didn't want an answer to? That literal interpretation -- as well as difficulty interpreting body language and facial expressions -- can make an aspie not just naïve, but vulnerable, and Willey cautions parents not to let their children become the prey of bullies or worse.

We experienced that firsthand when our son was in first grade and he liked to spend recess walking alone, thinking about his stories. Lots of aspies need their "alone time," as David likes to call it. In David's case, a bully started following him around and snatching his new glasses. "But Mom, I just don't understand it. He hits me but keeps saying, 'I'm your friend, David. You don't want to get your friend in trouble.' Why does my friend hit me?" It took several nights of tortured coaching before we could convince our little guy that this bully wasn't his friend -- even though he said he was -- and that he had to stand up to him and get a teacher involved.

Everything Spider-Man

In many ways, the most interesting aspect of Asperger's Disorder is the child's (or adult's) focus on an all-consuming interest. If they're lucky, it's an interest common among their peers. My son, for example, studies Spider-Man as if he were working on his Ph.D. It's not unusual to find him with four or more books spread out, because he's comparing and contrasting how Dr. Octopus has been portrayed across the years, especially minute changes to his appearance. He can manage to turn almost any conversation back to the topic of Spider-Man. And if he can't, that doesn't especially bother him -- he'll just keep talking about Spidey, whether you're listening or not.

(In fact, I can verify that he will continue talking about it even if you put your hands over your ears and cry, "No more! I cannot stand to hear one more word about Spider-Man today!" He'll just smile sweetly and say: "I'm sorry, but I just can't help it. I just love to talk about it so

much!")

Often, the focus of a child with Asperger's is a topic that's popular with other kids -- cartoons, video games, computers and animals are all very common, says psychologist Sally Ozonoff, co-author of "A Parent's Guide to Asperger Syndrome and High-Functioning Autism" (Guilford Press, 2002). The difference is the intensity of their interest: The aspies want to talk/read/think about nothing else but their special interest (the clinical term for this is "perseveration"), and can resent activities that take them away from it.

Donna Cravey of Cross City, Fla., says her 12-year-old is now totally into Pokemon, but before that he was obsessed with RV campers, specifically the slide-in kind that fit on the back of pickup trucks. He had downloaded and printed schematics and designs of dozens of different RV trailers and carried them around on a little clipboard, as well as drawing and designing new ones of his own.

A focus on things mechanical is also rather common because aspies tend to have a good understanding of mechanics and physical sciences, says Ozonoff, who sees patients at the M.I.N.D. Institute, a national center for autism spectrum disorders at the University of California, Davis. Ozonoff has treated four children obsessed with vacuum cleaners. Their knowledge base was amazing: "I'd tell them, 'Oh, I have a Hoover Elite 2000,' and the child would recite every detail about that vacuum, even though it was now out of production."

Other children Ozonoff has seen had interests in very specific parts of history. She currently has a patient who talks constantly about the Greco-Roman War. He's 9.

The older the child is and the more unusual his interest, the more difficult it can be for a child to fit in. The 16-year-old who talks incessantly about Ford Mustangs comes across as eccentric. The one who talks constantly about game show hosts or teeth or deep fat fryers (all real

examples) is going to be called weird.

Some aspies grow up to be very successful in their fields of interest, especially computers or mathematics or a particular academic pursuit, says Attwood. (Remember that computer science major at college who would get so caught up in programming that he'd forget to sleep, eat, bathe or go to class? He's a millionaire now; he may be an aspie.) Others, unfortunately, may have difficulty getting past the job interview and keeping the job -- not because the employer questions their honesty, integrity or knowledge, but because of their lack of interpersonal skills. What makes the difference, says Attwood, is the severity of their case of Asperger's and the amount of intervention they get.

A Different Ending

It's been nearly a year since we "discovered" Asperger's syndrome, and it feels like we are finally pulling together the variety of services David needs.

While other parents of aspies often tell horror stories of dealing with school systems, we've been fortunate. Matching the right teacher to the Asperger's child is critical, according to autism expert Carol Gray, director of The Gray Center for Social Learning and Understanding in Jenison, Mich. She says the best teacher for an aspie child is affectionate, unassuming, has a sense of humor and, most important, has a lot of flexibility. We've been lucky this year to get a teacher whom David adores. Last month, the school agreed to provide several hours per week of special services to David, and a county-wide expert on Asperger's is being called in to evaluate what other services might be appropriate.

Outside school, David has started going to a social skills group once a week -- a form of therapy for kids with social communication problems. A psychologist at Children's Hospital who specializes in Asperger's has agreed to begin behavioral therapy for David (as well as training for my husband and me, so we can implement her plan at home).

Meanwhile, David remains unaware of his Asperger's diagnosis, although he understands that there are areas where he needs help, and that's why he's going to have therapy and extra assistance at school. He's generally a very happy child, other than his rather fierce resentment over being allowed to play video games for only 30 minutes per day. He's made a close friend in school this year who invites him over to play at least once a week, which is a wonderful new experience for him.

In preparing this article, I've had the unique opportunity to ask some of the world's top experts on Asperger's, "When do we tell him?" Their answer -- "When he asks, 'Why am I different?' " That's the day we'll sit him down and show him this article and explain that, yes, he's a little different, but he's not defective.

David might need extra help in some areas others take for granted, but he also has capabilities that most of us don't. His incredible determination and thirst for knowledge will take him far, and all the therapy isn't designed to fundamentally change him, but to help him navigate through the world we "neurotypicals" have designed. I have no doubt that he'll find his own way to contribute to it.

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Catching up With Autism

More children are reported developing the disorder. But that could just mean better awareness or a widening of definitions. Still unknown: What causes it?

A major new government study has found a much higher prevalence of autism than studies done in the 1980s and early 1990s. The findings, though, still don't answer an important question: Is autism truly on the rise? Anecdotal reports from schools, doctors, service agencies and parent groups suggest a dramatic increase in children with the neurological disorder. But some experts say that could simply be a result of growing awareness of the

condition: More children are being diagnosed because more people know about it.

The new study, done in the Atlanta area, found that 34 of every 10,000 children had autism or a related condition - compared with a rate of 4 to 5 per 10,000 reported in previous studies conducted elsewhere in the last two decades.

"The results certainly confirm the impression that many professionals and others have that there are more children who fit the criteria for autism," said Marshalyn Yeargin-Allsopp. A medical epidemiologist with the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, she headed the study.

"It's clear there are more children being identified for services," she said. "But it could be because services are available, more children are being identified."

The new data, published this month in the Journal of the American Medical Association (JAMA), support several other recent studies in the United States and Europe, which found the rate of autism is higher than once thought. Whether there really are more children developing autism compared with previous generations is impossible to say, because there are no long-term studies tracking trends. Also, a broadening of the definition of autism to include milder forms, and a better understanding of the disorder, have led to more children being evaluated and diagnosed.

The Atlanta study, which included children 3 to 10 years old in the five-county metropolitan area in 1996, is part of a larger effort by the CDC to get accurate regional measures of just how big a problem autism is. In this area, CDC-funded studies are under way both in New Jersey and in the Philadelphia region to determine the prevalence and to look for possible causes and risk factors.

Autism is a brain disorder that hinders the ability to communicate, interact and form relationships, and go about day-to-day life. Because the disorder, which ranges from mild to severe, tends to run in families, a strong genetic component is suspected. But researchers also are looking at other factors, such as environmental influences, that may come into play. Some parents suspect childhood vaccines, but medical scientists are skeptical of that link. Parents of autistic children often report that their children seemed healthy and normal in the first months or year of life, but then stalled or regressed in their development.

"She was a terrific, great baby, absolutely normal, until she was 2," recalls Julie Clipp of East Greenville, Montgomery County, whose daughter, Casey Ralston, 10, has autism.

Casey attends the Timothy School, a state-approved private facility in Berwyn that can barely keep up with the demand for its services.

Applications to the school, which specializes in autism, are booming: For every four or five students accepted, 35 or 40 are turned away, said Judy D'Angelo, director of the school, which has 54 students between ages 5 to 16. She said referrals have increased 20 percent to 25 percent over the last five years.

"I really am concerned that we have so many that we can't help," she said.

Linda Tino of Havertown, whose 9-year-old son, Gregory, attends the school, said that even with more public awareness of autism, an ordinary outing with her son to a store or restaurant can turn into a nightmare. Because autistic children often make strange vocalizations and repetitive movements, and exhibit other unusual behaviors, they can attract unwanted attention. A huffy mother once told Tino: "If you can't control him, you shouldn't take him out in public."

Like the Atlanta study, the studies under way in Philadelphia, New Jersey and elsewhere also won't be able to answer whether the real incidence of autism has increased, since there are no comparable previous studies in those communities. However, they will establish a baseline reading for future research.

"What matters is there are more children out there with autistic disorders than we ever knew and they need services," said Jennifer Pinto-Martin, an associate professor at the University of Pennsylvania School of Nursing and a lead investigator for the CDC study in the Philadelphia area.

The research, done in collaboration with Children's Hospital of Philadelphia, has several components.

The first part will focus on children ages 3 to 8 living in Philadelphia, Montgomery and Chester Counties. Using records from schools, doctors' offices, medical clinics and other official sources, researchers will determine the rate of autism and related disorders.

In another study, being done in the Philadelphia region and several areas around the country, researchers will compare hundreds of autistic children ages 3 to 5 with a matched group of children who don't have the disorder. The goal is to find out what's similar or different between the two groups, which might point to some possible causes for autism.

"We will be asking the mothers all kinds of questions," Pinto-Martin said. "What happened to these kids from the time they were conceived until they turned 3 years old?"

In New Jersey, a prevalence study is being done in Hudson, Essex, Union and Ocean Counties, looking at 8-year-olds and using a similar approach to the Philadelphia effort. Children with autism are identified through official records, and then an expert reviews the records to determine whether the diagnosis is correct.

"Since no one ever established a base rate for autism in New Jersey, it will be impossible to say whether we're seeing a change in prevalence or not," said Walter Zahorodny, a researcher at the New Jersey Medical School who is heading the study. Researchers will, however, be able to compare the results with a 1998 CDC-funded study done in Brick Township in Ocean County, which found a rate of 40 per 10,000 for autism and 67 per 10,000 for autism and related disorders.

New Jersey also is establishing an autism database, by asking parents of children with autism and adults with the disorder to complete a lengthy questionnaire.

"This will give a much greater depth of information," Zahorodny said, and will be used to search for possible causes and risk factors.

The debate over whether something is fueling an epidemic of autism was heightened in November with the release of a report in California, which attempted to explain a dramatic increase in the number of children getting services for autism in that state. The report said the increase could not be explained away by a broadening of criteria for the disorder or the relocation of families to California for the express purpose of getting help for their children, suggesting other factors were at work.

In an editorial in JAMA accompanying the Atlanta study, Eric Fombonne, an autism expert at Montreal Children's Hospital, said there is little evidence to support the notion that there is an epidemic of autism. He said that while the reported increases in the prevalence of autism reflect changes in diagnostic practices and the availability of services, other factors can't be ruled out.

Susan E. Levy, medical director of the Regional Autism Center at Children's Hospital in Philadelphia and codirector of the Philadelphia study, said getting an accurate measure of the scope of autism will lead to something even more important: "Getting a more objective count will help people predict and plan better for what resources are needed."

Contact staff writer Susan FitzGerald at 215-854-2780 or sfitzgerald@phillynews.com.

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ADVOCACY

Lilly Vaccine Issue Will Get Front-Door Hearing It Deserves

"Look, Ma, no hands!" As soon as you hear those words, you can bet what happens next is going to look ugly.

Ask Eli Lilly and Co.

Two months ago, a measure protecting Lilly from vaccine-related lawsuits turned up in a very unlikely place -- attached to the Homeland Security Act.

Lilly professed surprise and said it had no hand in the matter. Lilly wasn't steering the measure, the company says. Just going along for the ride.

Indeed, diligent searching turned up no identifiable Lilly fingerprints.

But, predictably, this careening ride through the halls of Congress has ended in a noisy crash.

On Friday, Senate Republicans agreed to repeal the Lilly lawsuit protection measure. The House quickly pledged to follow suit.

For nearly a year's lobbying, Lilly has come away with little more than a public relations black eye.The White House and Congress drew up the Homeland Security Act to guard the nation against terrorists, not trial lawyers.

But must-pass legislation like this is particularly tempting to lobbyists. Get your pet measure attached to it, and it will pass into law. Nobody will dare vote no, or cast a veto, against critical legislation just to dunk a pesky rider.

What tempted Lilly was the prospect of shielding itself from lawsuits involving thimerosal, a vaccine preservative that contains mercury. Lilly no longer makes thimerosal.

Scores of parents of autistic children blame their kids' autism on thimerosal, and are suing. Lilly says the lawsuits are groundless.

Research on the question so far is inconclusive.

Last fall, Lilly spokesman Edward Sagebiel said Monday, Lilly asked Congress to add thimerosal lawsuit protection to the Homeland Security bill.

Lilly got the door slammed in its face. No way, the word came back. Congressional leaders wanted a clean bill -- one not burdened with lots of special favors.

At that point, Sagebiel says, "We stopped our lobbying efforts."

But when the measure emerged from Congress, lo and behold, there was the lawsuit protection.

There was no lack of suspects, including maybe some unidentified Capitol Hill ally of White House budget maestro Mitch Daniels, a former Lilly executive.

All denied involvement.

But Lilly nevertheless appeared to have benefited from someone's cynical manipulation of critical national security legislation.

In a statement released Friday, Lilly said it "agrees that the process by which this legislation was enacted was not desirable, and fully understands the action taken by the Senate."

The legislative sleight-of-hand that slipped the lawsuit shield into the Homeland Security Act didn't just put egg on Lilly's corporate face. It also heightened the suspicions of those parents who are suing.

And it's handed ammunition, at least in a public relations sense, to their attorneys.

Lilly's not giving up, though. It plans to pursue identical legislation this spring, Sagebiel says.

In that effort, the company has powerful political allies. The list includes Senate Majority Leader William Frist, a medical doctor who favors the lawsuit shield.

And that's the way to go about it. As a piece of separate legislation. Debated on its merits, in full public view.

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Frist in Unusual Deal to Reverse Vaccine-Liability Decision

A Kinder look at Frist

40955.story?coll=la%2Dheadlines%2Dnation

Senate Majority Leader Bill Frist (R-Tenn.) announced a deal Friday to repeal controversial measures tacked onto the law creating the new Homeland Security Department, including an amendment granting vaccine-preservative makers liability protection.

The provisions were inserted into the legislation at the eleventh hour last fall. Critics said the provisions were unrelated to the main bill and were inserted to benefit special interests.

The agreement to undo the provisions was a departure from the norm on Capitol Hill.

Frequently, special-interest favors are slipped into bills at the end of a congressional session. Rarely, if ever, are they yanked off the books within weeks of enactment.

But that is just what the Republican-led Congress is about to do under the pact Frist and his House counterparts struck with a trio of GOP centrists.

Legislation to scrap the vaccine-liability language, repeal another provision that benefits companies that move overseas to avoid taxes and alter a third criticized as an unfair break for Texas A&M University will move in the Senate next week, Frist said.

It then is expected to win speedy approval from the House. The legislation will be attached to a major government spending bill that President Bush is expected to sign.

The deal honored a pledge made last year by Frist's predecessor, Sen. Trent Lott (R-Miss.). But it still represented a major concession by the new majority leader in his first week on the job.

The agreement could help Frist bank a critical amount of goodwill from GOP centrists as he seeks their much-needed support for Bush's ambitious legislative agenda.

"I appreciate [Frist's] efforts to address these unresolved issues from the homeland security bill," said one of the three centrists, Sen. Lincoln Chafee (R-R.I.). "This is a positive sign of Sen. Frist's willingness to work with moderates within the party." Lawmakers and aides marveled at the deal, a setback for some influential Washington lobbies.

"It's not a normal occurrence," said Dave Lemmon, an aide to Sen. Debbie Stabenow (D-Mich.), a leading critic of the vaccine provision. "And for Washington, this is lightning-quick."

During the final debates last year on the homeland security bill, Frist had argued forcefully for the language granting liability protection to makers of mercury-based vaccine preservatives.

As sponsor of a separate vaccine bill that contained nearly identical language, Frist said such measures were needed to boost an industry essential for public health. His argument was highly influential -- in part because he is the only physician in the Senate and is one of his party's leaders on medical issues.

At the time, Frist voted against a Democratic amendment to strike the vaccine-liability language and the other provisions that came under criticism.

But the issue did not go away. Critics accused congressional Republicans of tilting the legal system in favor of drug companies and at the expense of autistic children.

Hundreds of parents have alleged in lawsuits that the vaccine preservative thimerosal caused autism in their children. Eli Lilly & Co., the preservative's chief maker, and other defendants in the suits deny the charge.

Under the provision added to the homeland security bill, plaintiffs in the thimerosal litigation are forced to seek compensation out of court, through a special fund for victims. Under the proposal Frist agreed to Friday, the provision would be repealed and the legal cases could proceed.

However, Frist secured a commitment from Chafee and his two GOP allies, Sens. Susan Collins and Olympia J. Snowe, both of Maine, for the Senate to revisit the issue later in the year. He told reporters he wants "a more comprehensive approach" to vaccine-related reforms.

Asked if he had changed his mind about the need for certain liability protections for the vaccine industry, Frist said: "Absolutely not."

The provision that involves U.S. corporations with overseas headquarters allows those companies to obtain federal homeland security contracts if they meet certain conditions. Under the repeal agreement, they would face much steeper hurdles to obtaining such contracts.

The third provision targeted by Friday's deal centers on language in the law intended to promote homeland-security research. Critics said the language gave Texas A&M an edge in obtaining government money -- a nod to influential Texas Republicans. Under the Frist-brokered deal, more colleges and universities would be eligible to compete for the research grants.

The deal followed through on the promise Lott made to Chafee, Collins and Snowe in November. The three had threatened to vote for the Democratic amendment to strip the controversial provisions from the homeland security bill.

Had the amendment passed, Lott feared the entire bill might have been sunk. So Lott promised the provisions would be revisited in the new Congress. Negotiating in the Senate Republican cloakroom during a crucial roll call, Lott got House leaders to approve the deal by phone. He reached Speaker J. Dennis Hastert (R-Ill.), en route to Turkey.

But Lott last month was toppled as Republican leader after making a remark considered racially divisive. It had been unclear, until Friday, whether Frist, who is considered a strong ally of Lilly and other pharmaceutical companies, would honor Lott's word.

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The Victim Friendly National Childhood Vaccine Injury Compensation Act: You've Got to Be Kidding!

Anyone who has yet to engage in practice governed by the National Childhood Vaccine Injury Compensation Act, a step required for all current vaccine injury and death claims as a condition precedent to litigation in a private forum, should proceed with great caution. Though the Congressional intent was to create a victim-friendly statute which provided just and fair compensation quickly and without the uncertainties and proof problems inherent in civil actions, frequent practitioners under the Act are in virtually universal agreement that the program, as it has evolved during the past decade and a half, is a perversion of the Congressional intent.

It certainly does not take into consideration the injury suffered by the victim (usually an infant or child), the emotional and psychological effect of the child’s injury on the parents, or the quantity of work which an attorney with a case before the Claim Court must accomplish to have any reasonable chance of prevailing on such a claim.

Unmistakably, pursuing a claim through the Act’s process is tantamount to litigation in every sense. The only difference is that instead of the vaccine manufacturer, the “defendant” is the United States of America. The lawyers representing the United States are, of course, from the Justice Department, and the Special Masters assigned to hear these matters are employees of the federal government.

The Special Masters uniformly follow established goals of examining the issues presented in an individual case, unaffected by the reality that the United States is their employer. Since they are constantly dealing with tragic events, they feel themselves bound to strictly interpret the administrative procedures for evaluation of claims, not necessarily to the benefit of the victim, but rather to harmonize with prior Claims Court opinions involving matters that arose in unrelated legal contexts.

Equitable tolling is not available under the Act. Under the Federal Tort Claims Act, if an individual injured by a vaccine could prove that the government violated the 21 C.F.R. regulations applicable to that vaccine, it would be entitled under Berkovitz v. United States to bring a non-jury federal tort claim. Many such civil actions have been brought in the past: Berkovitz v. United States, 486 U. S. 531; Griffin v. United States, 351 F.Supp. 10, aff’d, 500 F.2d 1059 (CA3 1974); Loge v. United States, 662 F.2d 1268 (CA8, 1982); In Re Sabin, 763 F.Supp. 811 (D.Md. 1991); St. Louis University v. United States, 5 Fed. Appx. 133 (CA4 2001); Baker v. United States, 817 F.2d 560 (9th Cir. 1987).

If a victim of the government’s negligence could not discover, and did not discover, that it was the government’s negligence, at least in part, which caused that plaintiff’s injuries, the court would evaluate the claimant’s basis for asserting the doctrine of equitable tolling. Proofs would have to be offered as to why that individual had not commenced the action within two years from the first sign of injury, preliminary motions would be brought and hearings held, and discovery would take place to determine whether or not the plaintiff does or does not fit the criteria of cases such as United States v. Kubrick, 444 U.S. 111 (1979); Tyminski v. United States, 481 F.2d 257 (3rd Cir. 1973); Ciccarone v. United States, 486 F.2d 253 (3d Cir. 1973); Zeleznik v. United States, 770 F.2d 20 (3rd Cir. 1985.

When that same plaintiff brings an action under the ostensibly victim-friendly Act, no excuse for a late claim is acceptable. Equitable tolling is not permitted: if the claim was not brought within three years from the date of the occurrence, the claim is barred, and any hope of a private damages action in the event an unacceptable claims resolution follows is destroyed. Brice v. Secretary HHS,240 F.3d 1367 (Fed. Cir. 2001). See, also, Hebern v. Secretary HHS, 01-0361V. The Brice decision was not based on federal tort claim practice, but rather in reliance on the holdings of two run-of-the-mill cases, Johns-Manville Corporation v. United States, 893 F.2d 324 (Fed. Cir. 1989); and Irwin v. Dept. of Veterans Affairs, 498 U.S. 89 (1990).

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