"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
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
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
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
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
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.
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
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.
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
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
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
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
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.
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
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
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
"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
"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
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
"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 email@example.com.
"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
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
At that point, Sagebiel says, "We stopped our lobbying efforts."
But when the measure emerged from Congress, lo and behold, there was the
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
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
And that's the way to go about it. As a piece of separate legislation.
Debated on its merits, in full public view.
* * *
Frist in Unusual Deal to Reverse Vaccine-Liability Decision
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
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
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
"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
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
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.
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 childs 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 Acts 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
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, affd,
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 governments negligence could not discover, and did not
discover, that it was the governments negligence, at least in part, which
caused that plaintiffs injuries, the court would evaluate the claimants 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).
ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
DISCLAIMER: All information, data, and material contained, presented, or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of the publisher, and is not to be construed or intended as providing medical or legal advice. The decision whether or not to vaccinate is an important and complex issue and should be made by you, and you alone, in consultation with your health care provider.
Copyright 2013 by Vaccination News, A Non-Profit Corporation. All Rights Reserved. This content may not be copied unless permission in writing from Sandy Gottstein has been obtained.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"