Schafer Autism Report 8-20-02

Vaccination News Home Page

SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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August 20, 2002 CALENDAR LISTING: EVENTS@doitnow.com

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RESEARCH

* UK's Department of Health to Repeat MMR Study

* Language Gene Is Traced to Emergence of Humans

CARE / EDUCATION / ADVOCACY

* Disabled Kids May Feel Budget Pinch, Calif Centers Running Out $$ Fast

* Ark. Vaccination Waiver Overruled U.S.

* Special-Ed Suit Will Hit NYC School Head On 1st Day

* Caring for Kids With Emotional Disorders Grows Increasingly Stressful

* HHS Urges States To Expand Home And Community Based Care For

Disabled Residents

COMMENTARY & LETTERS

* Interpreting Research 'Researchers identify link ... '

* On Denying Dr. Singh's Research

* New Forensic Definition of Autism

RESEARCH

UK's Department of Health to Repeat MMR Study

[By Jo Hartley in GP Magazine, which is not available online. Thanks

to Jackie 'Jabs'.]

Government researchers are to replicate the 1998 study by Dr Andrew

Wakefield, which claimed there was a link between MMR and autism.

GP learnt last week that the DoH has provided £300,000 in funding for

an extensive research programme into MMR in a bid to end the controversy

surrounding the vaccine's safety.

Virologists at the National Institute for Biological Standards and

Control (NIBSC) will start work on the programme next month.

They will work in collaboration with the paediatric gastroenterology

department at the Royal Free Hospital in London, where Dr Wakefield worked

when he carried out his studies on MMR and autism (Commun Dis Public Health

2001;4.273-7).

The hospital kept the samples of bowel tissue taken from the autistic

children used in the original study. These will be re-examined as part of

the new study.

Dr Muhammed Afzal, principal scientist at the NIBSC told GP: 'Samples

of bowel tissue and blood samples will come from the Royal Free, some will

be new and some will be the same as used in Dr Wakefield's study.

'We will do an independent study and see if we come up with the same

results.'

His colleague Dr Phil Minor added that the most recent US study, which

claimed to have found increased levels of antibodies to MMR in autistic

children, was fundamentally flawed.

The antibodies, picked up in the study by Dr Vijendra Singh from Utah

State University, could actually have been against human seroalbumin, which

is used to stabilise the MMR vaccine, according to Dr Minor.

GPs may be called upon to help by collecting blood samples from

autistic children on their lists.

* * *

Language Gene Is Traced to Emergence of Humans

[By Nicholas Wade.]

http://www.nytimes.com/2002/08/15/science/15LANG.html?pagewanted=print&position=top August 15, 2002

A study of the genomes of people and chimpanzees has yielded a deep

insight into the origin of language, one of the most distinctive human

attributes and a critical step in human evolution.

The analysis indicates that language, on the evolutionary time scale,

is a very recent development, having evolved only in the last 100,000 years

or so.

The finding supports a novel theory advanced by Dr. Richard Klein, an

archaeologist at Stanford University, who argues that the emergence of

behaviorally modern humans about 50,000 years ago was set off by a major

genetic change, most probably the acquisition of language.

The new study, by Dr. Svante Paabo and colleagues at the Max Planck

Institute for Evolutionary Anthropology in Leipzig, Germany, is based on

last year's discovery of the first human gene involved specifically in

language.

The gene came to light through studies of a large London family, well

known to linguists, 14 of whose 29 members are incapable of articulate

speech but are otherwise mostly normal. A team of molecular biologists led

by Dr.

Anthony P. Monaco of the University of Oxford last year identified the

gene that was causing the family's problems. Known as FOXP2, the gene is

known to switch on other genes during the development of the brain, but its

presumed role in setting up the neural circuitry of language is not

understood.

Dr. Paabo's team has studied the evolutionary history of the FOXP2

gene by decoding the sequence of DNA letters in the versions of the gene

possessed by mice, chimpanzees and other primates, and people.

In a report being published online today by the journal Nature, Dr.

Paabo says the FOXP2 gene has remained largely unaltered during the

evolution of mammals, but suddenly changed in humans after the hominid line

had split off from the chimpanzee line of descent.

The changes in the human gene affect the structure of the protein it

specifies at two sites, Dr. Paabo's team reports. One of them slightly

alters the protein's shape; the other gives it a new role in the signaling

circuitry of human cells.

The changes indicate that the gene has been under strong evolutionary

pressure in humans. Also, the human form of the gene, with its two changes,

seems to have become universal in the human population, suggesting that it

conferred some overwhelming benefit.

Dr. Paabo contends that humans must already have possessed some

rudimentary form of language before the FOXP2 gene gained its two mutations.

By conferring the ability for rapid articulation, the improved gene may have

swept through the population, providing the finishing touch to the

acquisition of language.

"Maybe this gene provided the last perfection of language, making it

totally modern," Dr. Paabo said.

The affected members of the London family in which the defective

version of FOXP2 was discovered do possess a form of language. Their

principal defect seems to lie in a lack of fine control over the muscles of

the throat and mouth, needed for rapid speech. But in tests they find

written answers as hard as verbal ones, suggesting that the defective gene

causes conceptual problems as well as ones of muscular control.

The human genome is constantly accumulating DNA changes through random

mutation, though they seldom affect the actual structure of genes. When a

new gene sweeps through the population, the genome's background diversity at

that point is much reduced for a time, since everyone possesses the same

stretch of DNA that came with the new gene. By measuring this reduced

diversity and other features of a must-have gene, Dr. Paabo has estimated

the age of the human version of FOXP2 as being less than 120,000 years.

Dr. Paabo says this date fits with the theory advanced by Dr. Klein to

account for the sudden appearance of novel behaviors 50,000 years ago,

including art, ornamentation and long distance trade. Human remains from

this period are physically indistinguishable from those of 100,000 years

ago, leading Dr. Klein to propose that some genetically based cognitive

change must have prompted the new behaviors. The only change of sufficient

magnitude, in his view, is acquisition of language.

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* * *

CARE / ADVOCACY / EDUCATION

Disabled Kids May Feel Budget Pinch, Calif Centers Running Out of Money Fast

Care For 170,000 People.

[California and Sacramento to get hit. By John Hill in the Sacramento

Bee, front page.]

http://www.sacbee.com/content/politics/story/4055133p-5080516c.html

California's 21 regional centers, overseeing care for 170,000 people

with developmental disabilities such as mental retardation [and of course,

autism], could run out of money by mid-September in the absence of a state

budget, officials said Monday.

For the Alta California Regional Center in Sacramento, the day of

reckoning is expected to come by Aug. 31. Without payments from the state

since July 1, the regional center has subsisted on a line of credit. But the

bank so far has refused to extend it past the end of the month.

The nonprofit regional center, with 11,500 clients in 10 counties in

and around Sacramento, sent letters in recent days to providers and families

of clients, warning that it can't pay for services unless a state budget is

approved.

The impasse in the Assembly showed no signs of breaking Monday.

Democrats argue that $4 billion of a $23.6 billion shortfall should be

covered with tax increases. Republicans say the shortfall was caused by

overspending and should not be fixed with new taxes.

Alta California is one of the first to feel the effects of the delayed

budget, but "most centers will run out of money by September 15 unless lines

of credit are extended," said Bob Baldo, executive director of the

Association of Regional Center Agencies.

"Some of the people in vulnerable situations may not have the staff to

take care of them," he said.

The Alta California center is asking providers, who do everything from

speech therapy for autistic children to running special care homes for

adults, to keep going despite the lack of money.

But even well-intentioned providers might have a hard time continuing

without money to meet payroll and keep the lights on.

"If you shut down for a week, all those people quit," said Audrey

Gifford, owner of Bridges Behavioral Language Systems in Fair Oaks, which

teaches autistic children to talk. "We have to rehire, retrain and get the

kids used to a whole new person. The kids suffer for months."

On Monday, the company canceled assessments of autistic children.

Gifford said she couldn't take on new clients when she couldn't be certain

there would still be money for existing ones.

"It's really terrible that we're down to this triage," she said.

For parents, just the prospect of disrupted services was enough to get

stomachs churning.

"Any change to a schedule for a person with autism is like dipping

them in boiling water," said Christine Totah of Davis, whose 7-year-old son

has been diagnosed with autism and mental retardation. "They can't handle

it."

Her son, Alexander, gets 20 hours a week of intensive tutoring in

basic living functions such as brushing his teeth and tying his shoelaces.

With the help of an aide, he's entering first grade later this month.

On Saturday, Totah got a letter from Alta California. She finds it

appalling that the state would allow such services to go unfunded because of

haggling over the budget.

"You don't let your children starve because you can't figure out how

to pay your PG&E bill and your Macy's bill ... ," she said. "As the parent

of a child with autism, I go through enough not to get a letter like that."

Totah called her elected officials Monday, but wasn't confident her

message was getting through.

"It's very, very upsetting," she said. "I have a hard time knowing

whether to believe the regional center, whether this really is a problem."

Susan Mendez, who depends on the regional center for home tutoring for

her 13-year-old daughter and a worker to provide occasional breaks, has

already been cutting back on expenses so the family will have enough to pay

for those things on its own.

Assembly leader Dave Cox has said that he would support an emergency

bill if one were proposed by Governor Davis.

* * *

Ark. Vaccination Waiver Overruled U.S.

Judge Overturns Religious Exemption to Ark. Law Requiring Kids' Vaccination

for Schools

[The Associated Press.]

http://abcnews.go.com/wire/Living/ap20020814_699.html

A federal judge has struck down a religious exemption to a state

statute requiring vaccinations before children can attend public school.

The exemption, granted only to members of "recognized churches,"

violates the establishment and free association clauses of the First

Amendment, Judge Susan Webber Wright ruled last week.

The decision left intact the state's vaccination requirement, meaning

students still are subject to the requirement with no religious exemption to

immunization.

The ruling came in a lawsuit brought by Cynthia Boone, the mother of a

student who refused to be vaccinated. The lawsuit said that although Ashley

Boone is not a member of a recognized religious group with tenets against

vaccinations, she personally believes that vaccinations "are against the

will of her God."

Cabot High School officials had barred Ashley from classes during the

2001-2002 school year because she refused to be vaccinated against hepatitis

B, a sexually transmitted disease.

Boone filed a federal lawsuit against the school district and the

Arkansas Health Department, claiming the state selectively allows religious

exemptions from vaccinations.

After the suit was filed, Wright temporarily ordered the district to

allow Ashley to return to classes. The order was later extended to allow her

to finish the school year.

As a result of the ruling, she will have to be vaccinated in order to

return for her senior year.

The effect of Arkansas' religious exemption, Wright said in Tuesday's

ruling, was to discriminate against individuals with sincerely held

individual religious beliefs.

"It is difficult to imagine how the state would have a compelling

interest in limiting the religious exemption to some religious sects and

Press.

* * *

Special-Ed Suit Will Hit NYC School Head On 1st Day

[By Carl Campanile.]

http://www.nypost.com/news/regionalnews/55052.htm

So much for the honeymoon.

Joel Klein is being slapped with a civil-rights lawsuit today - his

first day on the job as the new city schools chancellor, The Post has

learned.

Advocates for autistic children have named Klein as one of the

defendants in a suit alleging the city is violating the federal Individuals

with Disabilities Education Act. They said they plan on serving Klein the

papers today.

Other defendants include Mayor Bloomberg, former Schools Chancellor

Harold Levy and state education officials.

The lawsuit filed by Gary Mayerson and Associates charges that City

Hall and city schools officials are moving to transfer the Board of

Education's "impartial hearing office" to the city's Office of

Administrative Trials and Hearings (OATH) - without legal authority to do

so.

The lawyers say City Hall and the educrats are eliminating the

separate office to save money. Each year, the city has to shell out

"millions of dollars" after the officers rule that the Board of Ed has

denied appropriate services.

The suit charges that the transfer will eliminate kids' rights to an

"impartial hearing" by an independent officer to obtain special-education

services.

Plaintiffs' lawyer Christina Thivierge said OATH has different

standards that put more of the onus on the plaintiff rather than the

defendant to prove a case.

She also said the 41 Board of Ed hearing officers have been trained

and certified by the state Department of Education, while OATH officers are

not.

And she said the separate education panel hears 5,000 cases a year,

while OATH handles only 2,239.

Many of the autistic children the lawyers represent need "one-on-one"

services with a teacher.

But many times, parents have to slug it out with school officials

before a hearing officer to obtain more extensive services such as speech

and physical therapy, Thivierge said.

"We're concerned that this change will lead to diminished services,"

she said.

In cases of autism, Thivierge said, getting the proper service in a

timely manner is crucial to prevent kids from regressing.

School officials had no immediate comment.

But Levy previously blasted well-to-do parents of special-ed students

for exploiting federal rules to force city taxpayers to pay millions of

dollars to enroll their kids in private schools.

In many cases, the parents first enroll their kids in private

schools - and then file a claim for the city to reimburse them for the

costs. Hearing officers often side with the parents.

* * *

Caring for Children With Emotional Disorders Grows Increasingly Stressful

Over time; hurts parental well-being

http://www.osu.edu/researchnews/archive/children.htm

Researchers know that growing up in a dysfunctional family can have a

damaging effect on the psychological health of children. But conversely,

what effect do children with emotional disorders have on their families? Now

researchers have found that caring for children with emotional disorders can

take a toll on the child's family, causing harm to the family's well-being.

The effects tend to worsen over time, suggesting that the families and

caregivers of such children do not get used to caring for them.

Over time, the effect of the child's behavior on the parents

intensified and became more significant than the effect parental well-being

had on the child.

The researchers, led by Theresa J. Early, an assistant professor of

social work at the Ohio State University, drew these conclusions from a

study that looked at 164 families with children who had emotional disorders.

Early and her colleagues - Thomas K. Gregoire, an assistant professor

at Ohio State, and Thomas P. McDonald, a professor at the University of

Kansas - reported their findings in a recent issue of the Journal of Family

Issues

http://www.sagepub.co.uk/frame.html?http://www.sagepub.co.uk/journals/detail

s/j0179.html. <- - address ends here.

For the study, the researchers surveyed caregivers of children with

emotional problems who were receiving mental health services in North

Carolina. The disorders of the children - aged between 3 and 12 at the time

of the first survey - ranged from excessive shyness and paranoia to violent

behavior. The caregivers - a group that included parents and other relatives

of the children - were surveyed a second time 12 to 18 months after the

first survey.

To evaluate how well a child was doing, the researchers asked his or

her caregiver a standard set of questions about the child's behaviors. To

measure the well-being of caregivers, the researchers asked them to rate the

level of stress, pleasure and responsibility they were feeling with regard

to different aspects of their lives including work, home, relationships and

physical health.

From the data, Early and her colleagues found that child functioning

and caregiver well-being affected each other. "How upset parents are about

their own lives affected their child's behavior," Early said. "And the

child's behavior had an effect on the parents' overall well-being."

But over time, Early said, the effect of the child's behavior on the

parents intensified and became more significant than the effect parental

well-being had on the child. "It seems that caregivers do not become

accustomed to their children's problems as they go along," Early said.

Based on these conclusions, the researchers recommend providing

counseling and other kinds of support to families of children with emotional

disorders.

"It's not just the children with problems who need care, the people

caring for them also need help," Early said. "Our mental healthcare services

need to pay attention to the families of these kids because the family

members are the primary caregivers."

Early's recommendations gives finer shape to an emerging philosophy

for treating children with emotional disorders that favors caregiving by the

child's family as opposed to foster care or hospital treatment. According to

this view, which has been gaining support among researchers and mental

healthcare professionals since the 1980s, children with emotional and

behavioral challenges do better when cared for at home by their close family

as compared to when they are yanked away to an unfamiliar environment.

"There is a growing emphasis now on developing community-based

services that can wrap around the needs of the child's family," Early said.

A future research step, she explained, would be finding out what kinds of

support parents and family members need to do a better job of care-giving

without feeling less stressed in their own lives.

Early and her colleagues also suggest that intervention programs aimed

at treating children's emotional disorders should be available on a

long-term or open-ended basis. "These problems seem to continue for a long

time,"

Early said. "Therefore, many of today's managed care policies that

favor short-term treatment for such disorders need to be changed."

* * *

HHS Urges States To Expand Home And Community Based Care For Disabled

Residents Supports "Funding Follows the Person" Model

[Issue effects adults with autism.]

HHS Secretary Tommy G. Thompson last week urged America's governors to

make continued efforts to overcome the institutional bias in Medicaid

programs by providing benefits outside of nursing homes to Americans with

disabilities. Secretary Thompson noted that states already have many

affordable community-based options for serving people with disabilities, and

he pointed to a new Web site identifying promising practices.

"The President's New Freedom Initiative builds on our partnership to

assure Medicaid eligible individuals with disabilities are served in the

most appropriate setting according to their own needs and preferences," said

Secretary Thompson in a letter to the governors. "We believe there is a

tremendous opportunity to serve people who meet nursing facility levels of

care in their own homes or other community residential settings without

increasing costs."

A number of states have already developed and implemented programs

that serve individuals in community settings rather than institutions

including: diversion programs to keep people in the community, transition

programs to move individuals from institutional settings to community

placements, and program models in which the "money follows the person" to

assure stability for beneficiaries living in the community.

HHS has recently announced a new waiver template, "Independence Plus,"

designed to help states develop consumer directed services. The Center for

Medicare & Medicaid Services (CMS) has also established a Web Site to help

states share "promising practices" of innovative programs that states have

adopted to strengthen their community long-term support systems. These

promising practices are targeted towards diverse populations and usually

supported by a combination of funding mechanisms, such as the Medicaid Home

and Community Based Services (HCBS) waiver program, regular Medicaid state

plan options, programs funded by other federal agencies, and state and local

resources. The Web site is http://www.cms.gov/promisingpractices.

"Many states have developed innovative programs that meet the goals of

President Bush's New Freedom Initiative and we are excited to be able to

share their promising practices," said Secretary Thompson. "These practices

should be a starting point for fostering a dynamic examination of ways to

improve community support systems for persons of all ages with

disabilities."

Under the President's New Freedom Initiative, many other steps have

also been taken including $120 million in Systems Change Grants to support

state efforts to institute community-based approaches; the Ticket to Work

program, which provides for continued health insurance coverage for persons

with disabilities; and the National Caregiver Support Programs aimed at

helping families care for a loved one at home or in the community.

The text of Secretary Thompson's letter to governors today follows:

Dear Governor:

As partners in the Medicaid program, 7 million Americans with disabilities

depend on us to provide quality health insurance and long-term care

services. The President's New Freedom Initiative builds on our partnership

to assure Medicaid eligible individuals with disabilities are served in the

most appropriate setting according to their needs and preferences.

Nearly 20 percent of nursing home expenditures are made on behalf of

individuals who have a disability and are under 65 years of age. We believe

there is a tremendous opportunity to serve people who meet nursing facility

levels of care in their own homes or other community residential settings

without increasing costs.

Many states have engaged in activities and developed programs that

serve individuals in the most appropriate community setting rather than in

an institution. These programs and activities, developed under existing

authority, have included diversion programs to maintain people in the

community, transition programs to actively move individuals from

institutional settings to community placements, and program models in which

the "money follows the person" to assure stability of community living.

_______________________________________________________

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* * *

Interpreting Research 'Researchers identify link ... '

COMMENTARY

By Frank Marone

[Frank Marone is a behavioral physcologist who works with disable

children in Northern California, including those with autism. He has

written in concerned that many are parents are being pursuauded by the

editorial content and commentary in this newsletter and in other places, to

accept popular conjecture about the possible causes of autism, like viruses

and mercury in vaccines, as fact. This in turn will make the lemmings

amongst us make poor decisions related to the health of our children, like

leaving them unvaccinated and prone to proven health hazards. Marone here

reviews some basic scientific principles for the socratic pursuit of the

truth.]

We so often read some headline or other such as 'Researchers identify

link ... '. But, what does it really mean? Often, the situation is

described as or implies illustrating not merely a link but a 'causal link' -

one thing causes the other.

In science, when one collects information about two things there are

at least three distinct possibilities: correlation, sequence, and

causation.

Correlation means that two things occur together in time - both occur

at the same time, or both change over time. Establishing that two things

occur together in time or change over time tells us nothing at all about the

relationship between the two things, if any exists. Does the first cause

the second? Does the second cause the first? Does something else cause

both? Is it strictly coincidence?

A good example of correlation is the association (link) between age

and weight. As one gets older, especially in childhood, one tends to weigh

more. But one does not weigh more BECAUSE of being older. One weighs more

because of differences between caloric intake and expenditure, or because of

growing bigger as in childhood. Similarly, one does not become older

BECAUSE of weighing more. There is no direct relationship between age and

weight (i.e., age does not cause weight, nor does weight cause age), even

though they are strongly correlated.

Establishing a correlation is a good place to start to develop

hypotheses. But, no causal link is established until one can manipulate one

of the things being measured and demonstrate that this reliably causes

changes in the other thing being measured. Research that measures

occurrence of autism and genetic differences or occurrence of autism and

presence of abnormal substances or processes is in this realm. The two

things may be established as occurring together with some regularity. But,

we cannot know if one causes the other, or vice versa, if they are related

to a third variable, or if this is merely coincidence, without introducing

scientific manipulation.

Sequence - This sort of data can be very compelling. Whenever 'A'

happens, 'B' follows. Whenever I wash my car, it rains. Again, these data

do not establish causation. The tendency to believe that two things that

occur in sequence are related, the first causing the second, is so strong

and long lived that there is a special scientific expression to describe it.

In Latin, "Post hoc, ergo propter hoc", or "after this, therefore because of

this".

Establishing a sequence is a good place to start to develop

hypotheses. But, no causal link is established until one can manipulate one

of the things being measured and demonstrate that this reliably causes

changes in the other thing being measured. Research that suggests that

children show signs of autism following administration of vaccines falls

into this category. The two things may be established as occurring in

sequence with some regularity. But, we cannot know if one causes the other

without introducing scientific manipulation. In the car wash example above,

the number of nonoccurrences (I wash my car and it does not rain) helps to

establish the lack of a causal relationship. The number of nonoccurrences

in autism raises similar questions. If vaccines cause some cases of autism

(a causal relationship not established), what separates the vast majority of

individuals who do not become autistic after vaccines from others who do?

Causal Relationship - This is the Gold Standard for scientific

research. If a correlation or sequence seems to establish a potential

relationship, manipulating one thing will tell us if there is a true causal

relationship. This requires at least two groups of individuals identical

in every way. The manipulation is applied to one group and not the other,

and measurements are compared. Even under these strict conditions, mistakes

are made. There are numerous more complicated schemes to more clearly

insure that the manipulation is the actual cause.

When one reads that "Researchers have identified a link ... " it is

essential to appreciate exactly what is meant by the summary statement.

While correlations and sequences can be intriguing, only manipulations that

establish true causal relationships can inform future actions. Much time

and energy can be wasted pursuing correlations or sequences as though they

illustrate causation."

* * *

COMMENTARY and LETTER

On Denying Dr. Singh's Research