Schafer Autism Report 8-5-02

Vaccination News Home Page

SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

________________________________________________________________

August 5, 2002 CALENDAR LISTING: EVENTS@doitnow.com

ADVOCACY

* Senate Bill 2503 "A Particularly Lousy, Cynical Bill": CAN

* Letters Sent to Senators over Frist Bill Posted Online to Email List

* A New Poll Has Been Created For The S2053 Group

LETTERS

* Frist's Bill Supported: Parents Are 'Operating on Greed'

* Letters Blasting Public Health Officials Over Errors in ABC News

Program

* Risperidone / Risperdal: Bad Side Effec

CARE

* Autism a Stress Overdose California Man's Shooting Of Afflicted Son

* Program Teaches Police Officers Discretion

* Police Dog Aids In Rescue Of Autistic Pennsylvanian Boy

AWARENESS

* Autism Rate Reaches An Epidemic Level

* Expanding Definitions and Suspicious Statistics

* Latest Hollywood Script Deals: Jr. Autistic Sherlock Holmes

ADVOCACY

Senate Bill 2503 "A Particularly Lousy, Cynical Bill": CAN

>From Cure Autism Now Co-Founder, Jon Shestack

[Further consideration of this bill by Senator Frist, originally

scheduled for last week, has been delayed until September, giving concerned

parents more time to let their US Senators know what a disaster this can be

for families with children damaged by vaccines exolained vaccine reform

advocate Lyn Redwood of Safe Minds. Please see article below for more

information.]

Congress has recently been kind to the autism community and Senator

Frist in particular was a prime supporter of the pediatric health act, which

is why it is particularly disappointing to have the effort on S2503 led by a

man who has always been a friend to our community. There are no two ways

about it, from the autism community’s point of view, this is a particularly

lousy, cynical bill, and Cure Autism Now does not support it.

Cure Autism Now has consistently had one and only one position on

vaccines and autism (particularly the effects of Thimerosal). Our position

is that there is not enough good scientific information on the subject and

that is why we are funding work in this area.

S2503 is not about science and it is not really about universal

vaccination. It is about tort reform. It is about providing total legal

immunity for the vaccine community way before the facts are in. (It is as

if Congress were saying, “You’re innocent even if proven guilty.”) The

facts are not in. We don’t know yet if vaccines or Thimerosal have an

important causal link to autism. We don’t know yet to what extent the CDC

and FDA might have suspected a link but decided not to change policy or

share the information with the public.

Given how little we know for certain, it seems very inappropriate for

Congress to decide that the FDA, the CDC and the pharmaceutical industry

should not be held accountable for any possible ill effects of vaccine

policy, and in fact should get special protection over and above those

already carved out in the Vaccine Injury Compensation act.

On the contrary, we believe that in America children and their

families deserve special protection, not federal agencies or industry groups

with the ability to spend 700 million dollars a year lobbying congress.

We do support safe childhood vaccinations. We do support continued

scientific research. We also support full disclosure by the FDA and the

CDC. We do support reform of the Vaccine Injury Compensation Act. We

categorically do not support this bill, which comes to political conclusions

without any foundation in scientific fact.

Today this bill is being marked up in the Senate Health, Education and

Labor committee. We do not know if it will be voted down or sent on for full

consideration by the Senate. We do know that in any event there is no

further action to be taken until September when Congress is back in session.

We also feel that it is exceedingly unlikely that Senator Daschle will allow

this bill to come to the senate floor any time soon. We also believe that in

the current climate where anything that smacks of cronyism is coming under

extra scrutiny, even Republican and administration support for this bill

will be tepid.

We believe that at this moment there is nothing critical to be done.

If the bill gets out of committee unchanged Cure Autism Now will fight very

hard against it -- both behind the scenes and on the front lines. If we have

been laid back on this legislation, it is only because we felt that what we

were seeing in the Senate was politics not policy and that the likelihood of

S2053 becoming law was very slim. We promise to alert you to any change in

the status.

Cure Autism Now is at: http://www.cureautismnow.org/

* * *

Letters Sent to Senators over Frist Bill Posted Online to Email List

If you wrote letters to your Senator and other Senators over Senate

Bill 2053, which advocates insist, threatens to strip damaged children the

right to civil court protections, they can be read in the archives of this

new email discussion list created by the Schafer Autism Report. The purpose

of the list is to give the letters some public exposure to inspire more

parents to write their Senators.

http://groups.yahoo.com/group/S2053/messages

It also offers the opportunity for discussion of the letters and

related issues amongst those who choose to join the discussions. You do not

need to join the group to read the letters, or to post comments.

ALSO:

A New Poll Has Been Created For The S2053 Group:

Why do you suppose the Autism Society

of America does not inform its members

promptly about S 2053?

o They haven't figured out their position, yet

o They 're afraid of jeopardizing their non-profit status by mentioning

legislative political controversies

o They don't want to offend the pharmacuetical industry who backs S. 2053

o They don't consider the bill to be a real threat

o They consider S 2053 to be reasonable tort reform

o They figure their lobbying effort is enough of an answer

o They're worried they may seem too anti-vaccine by taking a public stand

To vote, please visit the following web page:

http://groups.yahoo.com/group/S2053/surveys?id=35508

You must join the group to participate. The above URL will help you.

* * *

LETTER

Frist's Bill Supported: Parents Are 'Operating on Greed'

Anyone who is opposed to Frist's bill is not acting in the best

interest of Autism research or the families of autistic people. Those who

oppose this bill are operating only on personal greed. The NIH was trying to

do a study which may have proved that the MMR vaccine was a causal factor

for early onset autism, and may have proved otherwise. It was stopped

because they couldn't get enough subjects.

Many families whose child fit the profile refused to participate

because lawyers told them not to inorder to reach a large settlement. The

lawyers and opponents of this bill will be profiting off of these parents'

hardship once again (as with the secretin fiasco) and not only will we be no

closer to dtermining causes, we will be opening the door for epidemics of

measles, mumps, and rubella.

Elwood Kleman

[Please post your response, if you have one, to

http://groups.yahoo.com/group/S2053/post or email edit@doitnow.com.]

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Subscribe, Read, then Forward the Schafer Autism Report.

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* * *

Letters Blasting Public Health Officials Over Errors in ABC News Program

Written by research advocates Teresa Binstock and Mark Blaxill

http://abcnews.go.com/sections/living/DailyNews/autismWNT020801.html

Dear Drs. Gerberding, Fleming, and Snider,

An ABC News segment (Aug 1, 2002) presented information about autism

(1) and included a substantial amount of incorrect information on

thimerosal, as promulgated by Lisa Freund, M.D., of the NIH's NICHD (2).

An ABC News webpage mentions that "Researchers at the Centers for

Disease Control in Atlanta are now planning to conduct research revolving

around mercury." (3)

That statement causes me great concern. In 2001, a CDC group used an

HMO database so as to study the relationship between autism and the amount

of thimerosal (49.6% ethylmercury by weight) injected into infants. The CDC

group found a statistically significant association between autism and

levels of phyisician-injected thimerosal and, as a result: initiated

extensive tinkering with the data (eg, data dilution) and distributed public

statements conveying that no such association was found. However, a

CDC-transcript obtained via FOIA documented that at a non-public meeting,

the CDC group made clear that the association with autism and other

autism-spectrum disorders had been found (4). An unbiased observer might

conclude that this particular group within the CDC had committed scientific

fraud (eg, data dilution in pursuit of creating a non-finding) and also had

deliberately misled the public (eg, via the phony findings trumpted on a

webpage of the Am Assoc of Pediatrics).

Thus far the CDC's track-record regarding thimerosal and autism is

akin to Harken, Enron, and WorldCom accounting practices. The CDC's

upper-level staff ought correct the disinformation created by the

thimerosal/autism study-group. In the absence of such correction, I am very

skeptical of the scientific validity of CDC studies regarding autism in

relation to mercury, ethylmercury, other toxic metals.

Teresa Binstock

Researcher in Developmental & Behavioral Neuroanatomy

http://abcnews.go.com/sections/living/DailyNews/autismWNT020801.html

2. Date: Fri, 02 Aug 2002 13:14:16 -0500

Dear Drs. Zerhouni and Alexander,

Last evening (August 1, 2002), ABC News presented a segment about

autism and included quotes from Lisa Fruend, who enjoys a faculty position

with the National Institute of Child Health and Development (NICHD). As

quoted in the news item, her statements about thimerosal are false, and I am

dismayed. If she knowingly presented false information, then she is guilty

of fraud, and her NIH position ought be terminated. If she presented false

information based upon her own ignorance, then her grant-applications and

grant-projects currently occurring ought be subjected to immediate review.

As delineated by Mark Blaxill, in his letter of response to Dr.

Freund, she stated:

"Vaccines have not had mercury in them for years," says Freund. "And

if that had a direct impact, we would probably have seen a decrease in a

reporting of the disorder, and that has not occurred. However, it would be

important to know the symptoms of children who did receive this and have the

disorder. It could be that some children, because of a genetic

predisposition, have a vulnerability to low doses of mercury, which results

in something along the autism spectrum." (a)

Not only did she present erroneous information about thimerosal and

its epidemiology (a), but her focusing upon "genetic predisposition"

overlooks children with increased susceptibility that is transient -- eg,

due to chronic diarrhea of infancy, persistent colic, autistic

enterocolitis, etc. Thus Dr. Freund has presented at least two reasons why

her grant-applications and current grant-projects ought be scrutinized with

greater care and urgency; and if she knowingly committed fraud, her NIH

appointment should be terminated. Furthermore, in so far as she was

presenting herself in accord with her NIH credentials, she and the NIH

should take steps to correct the thimerosal misinformation she presented

nationally via ABC News.

Teresa Binstock

Researcher in Developmental & Behavioral Neuroanatomy

Letter from Mark Blaxill to Lisa Freund regarding her misstatements to

ABC News:

Dear Dr. Freund,

If you are going to speak publicly regarding the toxicity of mercury

and its possible role in autism, you should get your facts straight. ABC

News quoted you in their recent autism story, saying the following

"Vaccines have not had mercury in them for years," says Freund. "And

if that had a direct impact, we would probably have seen a decrease in a

reporting of the disorder, and that has not occurred. However, it would be

important to know the symptoms of children who did receive this and have the

disorder. It could be that some children, because of a genetic

predisposition, have a vulnerability to low doses of mercury, which results

in something along the autism spectrum."

This is just plain false. The new policies suggesting removal of

thimerosal from vaccines were issued in July 1999, barely three years ago.

Thimerosal-containing vaccines were not recalled and meaningful stocks have

been reported as remaining in inventory even this year. The onset of autism

can occur any time before the age of three and most diagnoses are made when

children are four and five years of age. Many come later than that. So any

effective decrease in reporting will depend on a) a meaningful reduction in

exposure, b) sufficient time for toxic effects to be felt (a latency effect

with mercury exposure is well known) and c) sufficient time for diagnoses to

be carried out and reported.

There is indeed a testable hypothesis regarding the mercury theory of

autism. As with any iatrogenic cause, it is only natural that people in the

medical establishment would hope that exposures to mercury, including

thimerosal, were not involved in the increases in autism. So far, however,

the evidence at hand is all consistent with the hypothesis, contrary to your

false statement to ABC News. You are a trained scientist and you should know

better: wishful thinking should not get in the way of the facts.

Mark F. Blaxill

Cambridge MA

http://abcnews.go.com/sections/living/DailyNews/autismWNT020801.html

4. CDC's findings and their "official statements" about those

findings: The Simpsonwood transcript obtained by FOIA:

http://www.altcorp.com/safeminds.htm

(Boyd Haley, PhD, Chair of Chemistry, U of Kentucky)

http://www.mercola.com/2001/aug/15/cdc.htm

Additional information about CDC & thimerosal can be found in hearing

records of the House Committee on Government Reform, chaired by Dan Burton,

R-Indiana.

* * *

Risperidone / Risperdal: Bad Side Effects

Last week we clipped a news article about Risperidone

http://www.eurekalert.org/pub_releases/2002-07/osum-mei073102.php that

announced that the drug is suitable for treatment for autism. This letter

was sent in by a parent warning of side effects. This is not intended as

medical advice. Please consult your trained medical caregiver.

I need to warn parents that Risperdal causes tartive dyskinesia when

used long-term. I have a friend who is desperate for another drug now that

her daughter developed severe facial tics and tremors on risperdal.

Luckily, they are decreasing now after being taken off it, but she is back

to pulling out her eyelashes and those of her SIBs.

The study you reported was only a short term study.

Lu Carpenter, SF

* * *

CARE

Autism a Stress Overdose California Man's Shooting Of Afflicted Son

Was extreme, but all these families can relate to the pressure involved.

[By Jenifer B. McKim in The Orange County Register.]

http://www.ocregister.com/news/autism00803cci.shtml

When Delfin Bartolome shot his autistic son and then himself in a

bloody murder-suicide Monday, he mystified many who wondered how a loving

father could get so desperate.

But not other parents of autistic children. They know how close to the

edge even the most devoted parent can get.

"It breaks your heart, but you can kind of understand," said Mary Kate

Saunders, 41, a Laguna Beach mother who clearly adores her 8 1/2-year-old

autistic son, Kian. "I can understand where that man had gotten to. You just

pray you never get there."

Autism strikes one in every 250 children, making it the No. 1 learning

disability being treated by the state's 21 regional centers, according to

the California Department of Developmental Services.

Parents with autistic children are under incredible amounts of stress,

experts say, because many children with the neurological disorder can't

communicate, need 24-hour care, sleep fitfully and can turn violent.

For parents, one of the most difficult things to bear is that the

child's needs are never-ending.

"There is not a single parent of a severely autistic child who does

not lay awake at night wondering who will take care of their child as well

as they do when they are dead," said Jon Shestack, an L.A. movie producer

and co-founder of Cure Autism Now, which raises research funds.

"I don't look at (the murder-suicide) and think that guy was an alien

or a monster. I just think how terribly sad and hopeless he might have

felt," said Shestack, who has an autistic son. "I can imagine it because I

can understand the burden on families."

A funeral service was scheduled Sunday morning for Bartolome and his

27-year-old son, Dale, at St. Timothy's Church in Laguna Niguel.

Police are still investigating, seeking a motive for the killing.

Dale, who shared a bedroom with his parents, could communicate happiness

with hugs and high-fives, but he also had wild mood swings, couldn't talk

and sometimes would run from the Laguna Niguel home screaming, neighbors

said.

Bartolome's wife, Alexis, has yet to speak publicly about what her

husband did. Family members released this statement: "We imagine that he

believed his intentions were out of concern and love for his family during

what may have been a stressful time for him."

Other families can understand

Whatever the reason, the deaths struck a chord with families affected

by autism.

Teofila Beleber of Garden Grove said she cried after hearing about the

shooting.

"I cried because I saw my situation in that kind of family," said

Beleber, whose 16-year-old son is autistic. "Sometimes you don't have any

time anymore. It's very stressful."

Beleber said she and her husband rely on their faith to cope during

difficult times caring for a child who can sometimes be loving and sometimes

violent.

Her son needs constant supervision and can be loud in public. She said

a neighbor complains that he is loud in the garage. She tells the neighbor:

"I am trying. I said, 'You are very lucky you don't have a son like this.'"

Mary Kate and Kirk Saunders could be considered fortunate. Each

autistic child is different.

Kian, their son, may wear diapers and have a hard time talking, but he

also shows love, wrapping his arms around his parents and planting big

kisses on them.

He's like a big, brown-haired, hazel-eyed 3-year-old.

"Nobody can tell what developmental level he'll get to,'' Mary Kate

Saunders said. "He continues to make gains. Slow, steady gains."

Mary Kate Saunders said her sister noticed something was wrong with

Kian when he was 9 months old. He couldn't make eye contact or control his

head movements. He wasn't sitting up.

At first, her doctor told her she wasn't stimulating him enough - that

it was her fault. After many tests and doctors, Kian was diagnosed with

autism at age 3. He goes to a school for children with special needs and has

a nanny when his parents work.

Like many parents with autistic children, the Saunders are

sleep-deprived.

Kian has a hard time getting to sleep, so one of his parents has to

lie down with him. Often he'll wake up in the middle of the night and

wander.

To keep him safe, the family installed locks on the doors in each room

in the house. Despite those efforts, Kian has left the house a handful of

times unnoticed, sometimes returned by understanding neighbors.

They are terrified of the chance of an accident like the one in Laguna

Niguel in June in which a 5-year-old autistic girl left her house and was

struck and killed by a vehicle on Crown Valley Parkway.

"The stress of it is constant. It's 24/7," said Mary Kate Saunders,

who works part time as a physical therapist.

Parents Have Right To Be Angry, Grieve

The family relies on faith and a large support system to cope. They

also make sure to go out together once a week.

Doctors say that's good for everybody.

"Basically, I tell parents it is an extremely difficult situation.

They have every right to be angry. They have a right to grieve," said

Pauline Filipek, a pediatric neurologist and director of For OC Kids, a

center that works with autistic children and their families.

The Saunders, when feeling positive, like to think of their situation

as just requiring a change in expectations.

Kirk Saunders, an architect, said he at first dreamed that his son

would be an international soccer player and a Rhodes Scholar. Now the family

hopes Kian will someday be able to live independently.

"When you have a special-needs child, you have to reorient your

dreams," said Saunders.

* * *

Program Teaches Police Officers Discretion

[By Frank DeFrank in the Macomb Daily, Michigan.]

http://www.zwire.com/site/news.cfm?newsid=4920331&BRD=988&PAG=461&dept_id=14

1265&rfi=6

While a patrol officer in Warren several years ago, Shelby Township

police Chief Robert Leman responded to a complaint about a man mowing his

lawn -- at night. The man ignored repeated shouts from the officers and went

about his business as if they weren't there.Leman and his partner made an

obvious assumption.

"We thought he was drunk," Shelby's top cop said.

The officers were wrong. But before anything unfortunate happened,

they realized the man was neither drunk nor belligerent. He was deaf.

"We figured it out," Leman said.

Because of that memory and other stories that didn't have such benign

endings, Leman was more than attentive when Officer Carolyn Gammicchia

approached him with plans to implement something called the Law Enforcement

Awareness Network.

The title is simply a fancy name for a program that trains police

officers to recognize that they must respond differently to some people with

whom they come into contact.

"It trains first responders (emergency personnel) to deal with (people

with) mental illness or hidden disabilities," Leman said. "It teaches them

to recognize (such afflictions)."

In Detroit a few years ago, a man did not respond to orders by police

to put down a rake. He was shot when officers thought he was about to use

the rake as a weapon. The officers did not realize the man was deaf.

LEAN training is designed to prevent such occurrences, Leman said.

Gammicchia and her husband, Andrew, also a Shelby Township police

officer, are parents of an autistic child.

Their personal situation helped them "recognize the need," said

township Supervisor Ralph Maccarone.

Gammicchia could not be reached for comment, but Leman credited her

with pushing for the program.

"It showed some initiative on her part," the chief said.

The Shelby Township Community Foundation awarded the police department

$1,300 to implement LEAN training. Leman said the training will include

videos and literature.

The grant was one of 11 totaling more than $13,000 handed out recently

by the Shelby Community Foundation and is part of the funds the organization

received from the state's Tobacco Settlement Revenue fund.

Other grants went to service organizations and churches and schools

that offer programs to promote the health of youth and seniors.

"Our grant-making is designed to give back to our community," said

Linda Stout, foundation chairwoman. "We are pleased to provide these funds

to make a difference for the people these organizations serve."

Maccarone praised the organization for its efforts to improve the

quality of life for Shelby Township residents.

"(The foundation) is one of things that makes Shelby a great place to

live," he said.

* * *

Police Dog Aids In Rescue Of Autistic Pennsylvanian Boy

http://www.phillyburbs.com/couriertimes/news/news/0730k9rescue.htm

The boy, whom police haven't named, wandered away from his home in the

Hidden Valley development.

An 8-year-old Bensalem boy with autism who wandered away from home

Sunday morning was found and returned safely with the help of a K-9 search

dog who tracked his scent, Bensalem police said.

The boy, whom police haven't named, wandered away from his home in the

Hidden Valley development on Hulmeville Road at about 8:30 a.m. His father

called the police.

Jax, a Belgian shepherd police dog, and his handler, Officer Bill

McVey, tracked the boy after getting a scent from his clothing, Bensalem

Public Safety Director Steve Moran said. The dog followed the boy's scent

from about 11/2 miles to a wooded area near Resurrection Cemetery on

Hulmeville Road. The boy was found naked in some brush behind the cemetery,

police said. He was not hurt. It took them about an hour to find him, Moran

said. Police aren't sure why the boy wandered away or why he was naked, they

said.

McVey and Jax have been on the Bensalem police force for about a year,

Moran said. Jax is trained for patrol use and searches, but not for drug

sniffing.

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* * *

AWARENESS

Autism Rate Reaches An Epidemic Level

[By Kathy Walsh Nufer in the Post-Crescent in eastern Wisconsin.]

http://www.wisinfo.com/postcrescent/news/archive/local_4997779.shtml

APPLETON — Twelve-year-old Michael Raith cooks every Thursday in

summer school. He cannot speak, but gladly takes his turn stirring,

preheating the oven, flipping pancakes and setting the table for a feast.

This reinforcement of life skills is one of the things his mother,

Terri, likes best about the Appleton Area School District’s programming for

children with autism.

When the Raith family relocated to the Fox Valley in 1994, she and her

husband, Greg, chose to live in Appleton largely because of what they had

heard about the school district’s autism program, which enrolled about 30

children at the time.

As Appleton’s reputation spread, more families moved in. The rapid

rise in what was once a low-incidence disability also caused enrollment to

grow.

Today Appleton serves 70 pupils with autism, evidence of an epidemic

in identification across Wisconsin and the United States.

Berttram Chiang, a University of Wisconsin-Oshkosh special-education

professor, who heads a research team studying special-education

identification, said that while other disabilities have remained fairly

level in recent years, autism has risen consistently.

Autism is a complex neurological disorder that affects individuals in

the areas of social interaction and communication. It is a spectrum

disorder, meaning symptoms can occur in any combination and in varying

degrees of severity.

Terri Raith knew “something was not right” with her third child when

Michael was an infant. “He just didn’t give me eye contact when I interacted

with him,” she recalled.

At age 4, after early-intervention and early-childhood program

placement, Michael got a label. But the Raiths, like many other parents,

received no prognosis of what he would be able to learn.

Nonverbal with cognitive delays, Michael communicates with pictures to

express his choices to eat, drink or use the bathroom. He likes playing

computer games, loves the TV Weather Channel and bobs his head to just about

any kind of music.

Despite difficulties — epilepsy and grand mal seizures that started in

first grade, aspiration pneumonia, and years of regulating medication —

Michael continues to progress and the Raiths have learned to be grateful for

every small gain.

While autism remains something of a mystery, the explosion in

identification has become a public health issue, said Paul Shattuck, Autism

Society of Wisconsin board member.

+Article continues at:

http://www.wisinfo.com/postcrescent/news/archive/local_4997779.shtml

* * *

Expanding Definitions and Suspicious Statistics

One way of telling whether a given statistic is a fact or an artifact

is to ask whether the definition used fits the thing that is being defined.

Buried in the news story about the children with disabilities is the fact

that the definition of "disability" has been expanding over the years.

[By Thomas Sowell in CAPITALISMMAGAZINE.COM]

http://www.capitalismmagazine.com/2002/july/ts_stats.htm

One of the latest in the seemingly endless rounds of alarming

statistics is that one out of 12 American children has some form of

disability. With all the things that are supposedly getting worse, you have

to wonder how our life expectancy keeps increasing. A cynic might even

wonder if the increasing availability of money from the government has

anything to do with the increasing number of "problems" that need to be

"solved" by government programs.

One way of telling whether a given statistic is a fact or an artifact