SchaferAutismReport: Congressman Accused of Delaying Autism Legislation

October 13, 2006

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Friday, October 13, 2006 Vol. 10 No. 179

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ADVOCACY

* Congressman Accused of Delaying Autism Legislation

* Weldon and Maloney Push Vaccine-Autism Scare, Fight CDC

CARE

* Coach Jailed for Beaning Autistic Player

* Australian Government 'Will Consider' Disability Report

PUBLIC HEALTH

* Ped Med: Autism Rates Hinge On Definition

* Mercury Spills In Illinois Classroom, Students Contaminated

MEDIA

* Special on Autism One Radio - , Jr.

* Finding God in Autism

COMMENTARY

* Foolish Vaccine Exemptions NY Times Editorial

LETTERS

* On the NY Times Editorial on Vaccine Exemptions

* More on Drug Warnings

ADVOCACY

Congressman Accused of Delaying Autism Legislation

" Congressman Barton says the two sides are not far apart and

he's confident they'll be able to pass legislation the autism

community is happy with by the time this session of congress

ends in December. "

By Jack Fink Reporting cbs11tv.com Dallas.

http://cbs11tv.com/topstories/local_story_284232316.html

A powerful North Texas congressman is being accused of delaying

legislation that could help tens of thousands of families with autistic

children.

" It's an outrage " says Tom Damura, an Arlington father whose

19-year-old daughter, , has autism.

Damura is one of many parents nationwide who accuse republican

Congressman Joe Barton, of Ennis, the powerful chairman of the house energy

and commerce committee, of holding up a bill the senate passed that would

increase and improve autism research.

" There's nothing controversial about this bill... it's a public health

bill, " Damura said.

Autism is a bio-neurological developmental disability that affects the

normal development of the brain. It affects a child's social interaction,

communication skills, and other functions.

Government statistics show the number of autism cases involving people

between 6 and 22 years of age rose by 805 percent... from 15,580 cases in

1992 to 163,773 cases in 2003.

For his part, Barton says he supports most of the senate bill.

" There's certainly no question there's a need for more research into

autism, which I'm very supportive of. We're not anti-autism in the house.

Again, I understand the frustration the parents and grandparents have. "

Barton wants the senate autism bill to be a part of his bill the house

passed to reform the National Institutes of Health. That federal agency

oversees the nation's medical research.

Barton says his bill would take the politics out of the process and

create a common fund where research grants would compete and get money from

all the institutes.

According to the congressman his efforts would likely help autism gain

more research funding, but he says, " What I'm not willing to do is create a

system where autism plays by a different set of rules than everyone else. "

Barton says he's concerned about a provision in the senate bill that

would create additional centers of excellence for autism research.

The congressman believes the National Institutes of Health should do a

better job with the centers they already have. " If they're not doing a good

job with the 21 they have today, why would eight more make a difference? "

Damura worries Barton's bill will end up slashing autism funding. " The

bill is to combat autism, it's not to reform NIH. If he wants to do that he

still has his bill, " Damura said.

Congressman Barton says the two sides are not far apart and he's

confident they'll be able to pass legislation the autism community is happy

with by the time this session of congress ends in December.

Note: to join the political effort to get the CAA passed:

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• • •

Weldon and Maloney Push Vaccine-Autism Scare, Fight CDC

By Molly Lee

http://www.acsh.org/factsfears/newsID.859/news_detail.asp

Despite scores of studies supporting the safety of childhood vaccines,

including a 2004 report by the Institute of Medicine (IOM), many skeptics

continue to raise the alarm, claiming that thimerosal-containing vaccines

are causing an epidemic of autism in American children.

Autism is a complex developmental disorder that generally appears in

the first three years of life and is estimated to occur in 2/1,000 children.

It is broadly characterized by impaired communication skills and social

interactions, inappropriate attachments to objects or routines, repetitive

actions, and inappropriate or aberrant responses to verbal cues, pain,

danger, and change. The condition is poorly understood and its causes

largely unknown, one reason why some may jump to conclusions about

thimerosal-containing vaccines.

Two members of congress, Rep. Dave Weldon (R-FL) and Rep. Carolyn

Maloney (D-NY), have decided to ignore the scientific evidence -- including

the conclusions of the IOM and the Centers for Disease Control (CDC) -- when

they reintroduce their bill, the Vaccine Safety and Public Confidence

Assurance Act of 2006, to Congress next year. This legislation would create

a separate organization outside the CDC that will be responsible for vaccine

safety and research. Weldon and Maloney feel the CDC has a conflict of

interest involving vaccine safety, since it is the chief promoter of

vaccines. " There's an enormous inherent conflict of interest within the CDC,

and if we fail to move vaccine safety to a separate independent office,

safety issues will remain a low priority and public confidence in vaccines

will continue to erode, " said Weldon. Yes, there is an erosion of public

confidence in vaccines, but it is due to politicians and organizations that

raise unfounded fears about lifesaving vaccines.

+ Read more: http://www.acsh.org/factsfears/newsID.859/news_detail.asp

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• • •

CARE

Coach Jailed for Beaning Autistic Player

By The Associated Press

http://seattlepi.nwsource.com/othersports/288590_beaning13.html

A youth baseball coach accused of offering an 8-year-old money to bean

an autistic teammate so he couldn't play was sentenced Thursday to one to

six years in prison.

Fayette County Judge Ralph Warman sentenced 29-year-old Mark R. Downs

Jr. of Dunbar, Pa. to consecutive six-to-36- month sentences for corruption

of minors and criminal solicitation to commit simple assault. A jury

convicted Downs in September.

Warman revoked Downs' bond and sent him to prison.

Downs didn't speak at the sentencing but told reporters " I didn't do

nothing " as he was led out of the courtroom.

His attorney, Shaffer, said Downs was upset and looked forward

to appealing the verdict. Downs was ordered Thursday to undergo a mental

health evaluation and barred from coaching any youth league sport while on

parole.

Authorities said Downs offered to pay one of his players $25 to hit

Harry Bowers, a mildly autistic teammate, with a ball while warming up

before a June 2005 playoff game. Prosecutors said Downs wanted the

9-year-old out of the game, because the boy didn't play as well as his

teammates.

Player Reese Jr. said he purposely threw a ball that hit Bowers

in the groin and another that hit Bowers in the ear, on Downs' instructions.

Downs denied offering to pay Reese to hurt Bowers.

" These acts are extremely outrageous and extremely reprehensible since

the defendant was involved in the coaching of a youth league, " Warman said.

Bowers' mother, Bowers, said Thursday that since her son was

hit, she has struggled to get him to try new activities.

She said the boy fears that he would get hurt again.

Downs was acquitted on a more serious charge of criminal solicitation

to commit aggravated assault. Jurors deadlocked on a charge of reckless

endangerment. The judge declared a mistrial on the endangerment charge, and

prosecutors said they wouldn't retry him.

• • •

Australian Government 'will Consider' Disability Report

Article from AAP.

http://www.news.com.au/perthnow/story/0,21598,20574918-5005361,00.html

The New South Wales government department responsible for disability

services will carefully consider a coroner's recommendations about improving

care for severely disabled children and their parents.

A NSW coroner has recommended the Government consider funding for

early intervention services for severely disabled children and their

parents, after a struggling mother killed her autistic son.

The director-general of the Department of Ageing, Disability and Home

Care (DADHC), n O'Reilly, said the findings and recommendations would

be examined, but a number of government initiatives in recent years would go

some way to addressing the matters raised.

a Dawes suffocated her ten-year-old son, , at their western

Sydney home in August 2003, before attempting suicide.

An inquest into 's death told the family had difficulty accessing

early intervention services after was diagnosed with autism as a

toddler.

The coroner also recommended that DADHC, the Department of Community

Services and the Department of Education and Training should consider

setting up a working party to examine how relevant information could be more

effectively shared between the agencies to help disabled children and their

families.

Mr O'Reilly said the Government's $1.3 billion 10-year plan for

disability services would increase early intervention and support for

families with a child with a disability.

The plan includes extra respite and therapy places, parenting

programs, training projects, and extra caseworkers.

Mr O'Reilly said a system to share information across human services

agencies established more than 12 months ago would ensure there was no

breach of privacy for families.

The NSW Opposition said the coroner's comments should serve as a

wake-up call to the Government, which had neglected disability services for

12 years.

" Looking after a child with autism is a phenomenally challenging task,

it's a 24-hour a day task and sadly families looking after children with

autism have been completely ignored by the state government, " Opposition

disability services spokesman said.

Mr said many of the coroner's recommendations had been brought up

before, and he was " horrified " the Government still hadn't taken them on

board.

• • •

PUBLIC HEALTH

Ped Med: Autism Rates Hinge On Definition

By Lidia Wasowicz for UPI http://tinyurl.com/ektn9

At its most basic level, part of the debate over the cause and

consequence of the climbing numbers of autism diagnoses among America's

young centers on bookkeeping.

Defining, documenting and recording cases in systematic and consistent

fashion over the years, and decades, is a key step for properly accounting

for current trends -- and even more importantly for correctly calculating

the deposits to be made, in research, education, services and funding, to

cover the growing costs of these youngsters' special needs.

One of the most glaring items left blank in the ledger comes under the

heading of prevalence.

While the accuracy of statistics of affected children is steadily

improving, the figures are missing a historical context.

As one challenge, it was not until 1980 that the official criteria for

identifying autism made it into the official handbook of mental disorders

used to make a diagnosis.

Before that year, scientists say, estimates of autism prevalence were

based on little more than the conceptions of individual clinicians or

researchers, which fluctuated with the size of the population sampled and

manner of identification used.

More recent years also have seen little stability in the diagnostic

criteria, which -- just as in the case of attention-deficit/hyperactivity

disorder, depression and other mental illnesses -- have loosened up over

time.

Thus, the 1980 requirement of " a pervasive lack of responsiveness to

other people " has been relaxed to a requisite for only " a lack of

spontaneous seeking to share enjoyment, interests, or achievements with

other people. "

Likewise, the criterion of " gross deficits in language development " 14

years later became the more inclusive difficulty to " sustain a conversation

with others. "

Whereas the 1980 autism definition comprised only two diagnostic

categories -- " infantile autism " and " childhood onset pervasive

developmental disorder " -- the 1994 version swelled to five " pervasive

developmental disorders, " the scientific jargon for autism spectrum

disorders, that range in severity from having little speech and few

daily-living skills to functioning well in most settings.

Three of these connote what is commonly called autism: the severe

autistic disorder, the much milder Asperger's syndrome, and the

tongue-tripping " pervasive developmental disorder not otherwise specified, "

PDDNOS in doctors' shorthand, which lumps together children who show

symptoms but do not meet the criteria of either of the other two conditions.

The two remaining members of the group -- both rare but severe -- push

the reverse button on development.

Unlike the other four syndromes that affect some four times as many

boys as girls, the hereditary Rett's disorder -- named after Australian

doctor s Rett who identified it in 1965 -- is almost entirely

restricted to females.

Most boys with Rett's die before birth.

The syndrome, caused by a defective gene on the X chromosome, emerges

sometime between six months and 18 months in an estimated one in 10,000 to

15,000 girls, eating away at muscle tone and wreaking neurological havoc.

What up until then appears to be normal development halts and

retreats. The toddler begins rejecting parents and peers, ceasing to speak

if she was already talking, losing control of her feet, wringing and waving

her hands, suffering seizures and developing an awkward gait, according to

the diagnostic manual.

In similar fashion, " childhood disintegrative disorder, " which makes

its appearance as early as age 2 or as late as age 10, erases many of the

social, language and cognitive skills the child has acquired. These may

include speaking, relating to others, engaging in make-believe play, and

controlling the bowel and bladder.

Unlike ADHD, which is most likely to be first noted by teachers,

initial autism detection usually falls to parents.

Fresh from the hospital, they may immediately remark that the newborn

seems " different, " unresponsive to people or focusing intently and

enduringly on a single object. At other times, symptoms may cut short what

had appeared to be perfectly healthy development.

Although refined since psychiatrist Leo Kanner reported the first

documented cases of the disorder, the fundamental symptoms he described have

been largely retained in the diagnostic criteria for classic autism.

Social interactions are severely limited. So much so, the typical

rules of engagement -- detailed in every new parent guidebook -- do not

apply.

Small chance of playing peek-a-boo or hide-and-seek with a baby who

avoids eye contact or stays secured in his isolated world. Slim odds of

eliciting a smile, laugh or cuddle from a child who seems to prefer the crib

to his parents' arms.

Many autistic individuals, including adults, cannot read facial

expressions, body postures or gestures, ordinarily a natural-born skill

perfected early in life, doctors say.

This " illiteracy, " they note, can make the most common social

situations bewildering for someone who derives similarly puzzling meaning

from a smile as a sneer, from an open hand as a clenched fist.

Speech is impaired. Some children never utter a word. Some make

idiosyncratic use of language or only eerily echo what they hear.

Repetitive behaviors are typical. Little ones rock, spin, flap hands,

twist bodies in an endless encore.

Although Kanner was convinced all autistic children are born with the

condition, subsequent studies suggest up to a third may regress to it.

More common, less severe, Asperger's syndrome affects some 35 of every

10,000 children.

Although no social butterflies and prone to unusual, repetitive

mannerisms and in some cases learning challenges, these youngsters are less

apt to face delays in the development of language, cognitive or daily living

skills.

In some instances, they may have the IQ of a prodigy, though it is

likely coupled with the sociability of a hermit, according to the

psychiatric diagnostic manual.

A small number can blend into the mainstream.

Many take issue with being singled out as " abnormal " or stigmatized as

" deficient, " asserting they stand out no more than other idiosyncratic

individuals and urging greater acceptance of their differences, which may

not be as sizeable as commonly perceived.

Indeed, some researchers are beginning to question the widely held

assumption that autism steals away the so-called " theory of mind, " the

ability to comprehend divergent points of view.

Other physicians, however, caution against becoming overly blasé about

the special needs of a youngster with even minimal symptoms.

" The sort of stereotype of the Asperger's child is that they're all

going to go to MIT and be Bill Gates and start Microsoft and be

millionaires, and who cares how weird they are, " said Dr. Eileen Costello, a

pediatrician at the Boston University School of Medicine, co-author of

" Quirky Kids " (Random House, 2003), and mother of a 14-year-old son with mild

Asperger's.

" And, you know, that's true for a small segment of this population,

but it's just too appealing to think that that's where they're all going,

because it just isn't true. "

These less severe forms of autism, which weren't listed in the

diagnostic manual until 1994 and thus would be on a steep rise since then,

account for nearly three-fourths of the current diagnoses, guesstimate

researchers who argue against an autism epidemic.

" My personal impression is yes, there's an increase in this

population, but it's a very complicated question, " Costello said.

Next: Changing face of autism

* * *

Mercury Spills In Illinois Classroom, Students Contaminated

By Adam Shull for the ton News Herald http://tinyurl.com/yyetwj

A broken thermometer exposed East Burke High School students to

mercury Friday morning.

Burke County Public Schools Superintendent Burleson says that a

thermometer broke in an East Burke High allied health science class around

10 a.m.

Burleson says the class is held in an annex building at Hallyburton

Elementary School.

Burke County Fire Marshall Mark Pitts responded to the incident and

coordinated the clean-up effort, Burleson says.

Ken , operations chief of Burke Emergency Medical Services,

says Pitts called for a State Medical Assistance Team (SMAT) to clean up the

hazardous liquid.

says he arrived at Hallyburton Elementary around 1:15 p.m.

SMAT workers had students remove their clothes and all accessories

exposed to the mercury, says.

They then took showers in isolated parts of the parking lot using lava

soap, he adds.

says the students' clothes, jewelry, cell phones and more will

be decontaminated before they get them back.

The classroom where the leak occurred is quarantined as well, he says.

But all involved are not washed of the day yet.

says SMAT workers still have to get rid of 1,200 gallons of

contaminated water.

He says the level of contamination in the water will determine how

workers can dispose of it.

Burleson says students will have to submit blood and urine samples

soon in order to determine if they were exposed to unhealthy levels of the

metal.

He says he feels most of the safety precautions are just that,

cautionary.

The school system conducted a mock hazardous material drill last year,

which Burleson believes helped with Friday's response.

Burleson says the students were not injured and will return to school

Monday.

• • •

MEDIA

Special on Autism One Radio - , Jr.

www.autismone.org/radio

10:00 am - 10:15 ET

and Sandy Waters, " The Candy Store "

and Sandy interview Congressman , Jr., who speaks

about autism, funding, the Combating Autism Act, and the possible future

introduction of autism-related legislation in Illinois.

• • •

Finding God in Autism

A 40-day Bible study guide for parents of autistic children

An author's announcement.

I have a new book that will come out in stores on November 28th. Books

are available online at the website. The website is

www.findinggodinautism.com. Check out the website. Enjoy! Kathy Medina

• • •

COMMENTARY

Foolish Vaccine Exemptions NY Times Editorial

http://tinyurl.com/un8y2

States that make it easy for parents to opt out of vaccinating their

children are suffering increased disease rates as a consequence, according

to an article published yesterday in The Journal of the American Medical

Association. The findings should be a warning to all parents and state

officials who think they can let their guards down on immunizations that are

needed to protect both the children and the communities in which they live.

We saw what happened in Indiana last year when measles broke out among

children who had been schooled at home and thus avoided the compulsory shots

required of those who attend public schools. At least 34 people became ill,

of whom three were hospitalized, one with life-threatening complications.

Their families had succumbed to fears that the vaccine was dangerous,

forgetting that the disease itself was the real danger.

Now the new article by researchers at s Hopkins University, the

University of Florida and the Centers for Disease Control and Prevention has

taken a broad look at the rates of whooping cough in the 48 states that

allow people to be exempted from required shots for various nonmedical

reasons. All 48 of the states allow exemptions based on religious

objections, but 19 of them also allow exemptions based on philosophical or

other personal beliefs. Some states make it easy for parents to claim an

exemption by simply signing a prewritten statement on the school

immunization form.

Others make it harder by requiring a signature from a local health

official, a personally written letter, notarization or annual renewal.

Sadly, states that readily grant exemptions or allow personal belief

exemptions have about 50 percent higher rates of whooping cough, or

pertussis, compared with stricter states, after adjusting for demographics.

This is disturbing given that pertussis, which can cause severe illness and

death in young children, has been on the rise in recent decades.

The pendulum has swung too far toward letting parents opt out.

States need to work harder at educating parents about the value of

vaccination and should get tougher in granting exemptions.

• • •

LETTERS

On the NY Times Editorial on Vaccine Exemptions

Your editorial warning of " Foolish Vaccine Exemptions " ended by urging

" States need to work harder at educating parents about the value of

vaccination and should get tougher in granting exemptions " . With all due

respect, parents do not require further education about the " value of

vaccination " . What parents do require is scientific research conducted by

credible independent sources that will offer reasonable explanation why one

in every six American children suffers some type of early childhood

development problem, such as, autism, juvenile diabetes, rhumatoid

arthritis, allergies, ADD, ADHD, etc. etc? These early childhood

development problems have increased dramatically over recent decades, almost

in lock-step to the increased numbers of vaccinations their children

receive.

Consider the following statistics provided by the National Vaccine

Information Center:

In 1969, 1 in 7,100 children were diabetic - today, 1 in 450.

In 1970, 4 in 10,000 children were autistic - today, 1 in 166.

In 1976, 2 million children were asthmatic - today, 9 million

In 1997, 1.6 million children were ADHD - today, 4 million

In 1980, the Centers for Disease Control (CDC) and the American

Academy of Pediatrics (AAP) recommended children get 23 doses of 7 vaccines

by age 6 years with the first vaccinations given at 2 months. Today, the

CDC and AAP recommend 48 doses of 14 vaccines by age 6 with the first dose

given at 12 hours old in the newborn nursery. A 6 month old child can

receive 8 vaccinations in a single day. At age 15 months, a child can

receive as many as 12 vaccines on a single day.

No one knows for certain if universal childhood vaccines have

contributed to the dramatic increases in early childhood development, but,

we can rest assured the increases are real and they " co-incided " with the

increase in childhood vaccinations. In any event, the NY Times editorial

board has a great opportunity to remove at least some of the uncertainty

that has grown over recent decades, by supporting Rep. Dave Weldon-R-Fla and

Rep. Carolyn Maloney-D-NY, who have introduced H.R. 5887, the " Vaccine

Safety and Public Confidence Assurance Act of 2006 " and H.R. 5940 that seeks

credible, independent research of " unvaccinated vs. vaccinated " populations

that will help reassure parents vaccines are not causing more harm than

good.

I would respectfully suggest the NY Times support these parent driven

legislative efforts instead of urging states " get tougher in granting

exemptions " . After all, should these legislative efforts pass, parents will

be far more likely to voluntarily participate in universal childhood vaccine

policies, thereby greatly reducing the need for parents to seek

" exemptions " .

- Bob Moffitt, Sloatsburg, New York

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