SCHAFER AUTISM REPORT "Healing Autism:
No Finer a Cause on the Planet"
________________________________________________________________
Wednesday, January 12, 2005 Vol. 9 No. 6


PUBLIC HEALTH
* California's Autism Epidemic Tsunami Rapidly Growing
* Feds Failed to Disclose Financial Interest
* A Jab Too Far

COMMENTARY
* On the NIH Scandal

TREATMENT
* SPECIAL REPORT: Promising Future With ABA

CARE
* Coroner To Review 10 Deaths At Ontario Adult Care Centre
* Police in Florida Say Missing Autistic Teen Has Been Found

TSUNAMI
* Here and Gone, Just Like That

EVENTS
* On Autism One Radio - Thursday, Jan. 13, 10:30 am - 11:30 ET


PUBLIC HEALTH

California's Autism Epidemic Tsunami Rapidly Growing

[From California autism advocate Rick Rollens.]

According to the recently released report by the California Department
of Developmental Services (DDS), California's 36-year old developmental
services system has just experienced the largest number of new intakes of
children with professionally diagnosed full syndrome autism during a Fourth
Quarter reporting period in its history.
During the Fourth Quarter of 2004 (October - December), California's
developmental services system added a record 807 new children with full
syndrome autism, not including any children with any other autism spectrum
disorder such as PDD, NOS, Asperger's, etc. The 807 new intakes represents a
record number of new cases for a Fourth Quarter reporting period in the
system's 36 year history. On average California added 9 new children every
single day to its system with full syndrome during October, November, and
December 2004. The 2004 Fourth Quarter numbers represent a 16% increase over
the 2003 Fourth Quarter (676) intakes.
The 807 new cases of full syndrome autism reported during the Fourth
Quarter of 2004 accounted for 52% of all the new intakes for all the
eligible disabilities for that reporting period. The other eligible
conditions are: mental retardation, cerebral palsy, epilepsy, and conditions
such as Fragile X and Downs Syndrome that have mental retardation as a
component of the condition. Full syndrome autism has for some time now been
and continues to be the number one disability entering California's
developmental services system.
The magnitude of this ongoing tragic epidemic is truly mind boggling.
Ten years ago in January 1995, DDS reported that during the Fourth Quarter
of 1994 the system added 142 new cases of full syndrome autism. Today, ten
years later in January 2005, DDS reports that during the Fourth Quarter of
2004 there were 807 new cases added to the system. Ten years ago
California's developmental services system had a total of 5,775 cases of
full syndrome autism in its entire system. Ten years later in January 2005,
there are now 26,578 cases of full syndrome autism in the system. In
California's developmental services system, 8 out of 10 persons with full
syndrome autism are between the ages of 3 and 17 years old, 7 out of 10
under the age of 14. The tsunami has arrived.
* * *

Feds Failed to Disclose Financial Interest

[By John Solomon for the Associated Press.]
http://www.washingtonpost.com/wp-dyn/articles/A63256-2005Jan10.html?sub=AR

Washington - Government scientists have collected millions of dollars
in royalties for experimental treatments without having to tell patients
testing the treatments that the researchers' had a financial connection,
according to documents and interviews.
The personal royalties are legal, though the researchers developed the
treatments at government expense. But the Health and Human Services
Department promised in May 2000 that scientists' financial stakes would be
disclosed to patients, a pledge that followed an uproar over conflicts of
interest and mistakes in federal experiments.
The National Institutes of Health says it didn't implement a policy to
order the disclosure until last week, shortly after The Associated Press
filed a Freedom of Information Act request.
“Quite frankly, we should have done it more quickly. But as soon as
Director (Elias A.) Zerhouni found out about it, he ordered it done
immediately,” NIH spokesman John Burklow said.
The nearly five-year delay means hundreds, perhaps thousands, of
patients in NIH experiments made decisions to participate in experiments
that often carry risks without full knowledge about the researchers'
financial interests.
“It's hard for patients to make an informed decision when they don't
have all the information,” said Bill Allison of the Center for Public
Integrity, which monitors the ethics of government employees.
“When a doctor says, 'Here, try this experiment, it is safe, or it
will help,' and the patient isn't aware he has a financial interest in the
outcome of that treatment, it in essence is taking advantage of someone by
not letting them have all the information,” Allison said.
In all, 916 current and former NIH researchers are receiving royalty
payments for drugs and other inventions they developed while working for the
government, according to information obtained by AP. They can collect up to
$150,000 each a year, but the average is about $9,700, officials said.
In 2004, these researchers collected a total of $8.9 million. Only a
dozen received the legal maximum.
The government owns the patents and the scientists are listed as
inventors so they can share in licensing deals struck with private
manufacturers. In addition to the inventors' take, the government received
$55.9 million in royalties for the same inventions and put that money back
into research.
The arrangements can create concerns about conflicts.
For instance, two top managers in NIH's infectious disease division
have received tens of thousands of dollars in royalties for an experimental
AIDS treatment they invented. At the same time, their office has spent
millions in tax dollars to test the treatment on patients across the globe,
the records show.
Such research helps bring the treatment closer to possible commercial
use, which could in turn bring the researchers and NIH higher royalties.
Except for patent records and scientific journals, the patients have
had no easy way of learning about the researchers' financial stakes.
That's because NIH told doctors not to report royalties on their
government ethics disclosure forms and did not require the royalties listed
on patient consent forms until last week's policy.
Fifty-one NIH royalty recipients are currently involved in clinical
research involving the inventions for which they are being paid, meaning
they'll be affected by the new policy, according to the information obtained
by AP.
+ Full story here:
http://www.washingtonpost.com/wp-dyn/articles/A63256-2005Jan10.html?sub=AR




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* * *

A Jab Too Far
Babies are soon to face yet another vaccination. But is it safe? Here, one
GP argues that we are taking a reckless gamble

It was revealed last week that government advisers
have approved an injection to protect youngsters against
meningitis. But with the MMR controversy still fresh
in parents’ minds, is this necessary? In this highly
personal piece, Dr Richard Halvorsen argues the case
for caution.

[Not available online]

Are you alarmed by reports that the Government intends to introduce
yet another vacci¬nation programme aimed at all our very young children? You
should be.
Do we really want a re-run of the bitter and damaging controversy
which developed over the combined measles, mumps and rubella (MMR) jab? In
spite of intense pressure by ministers, uptake of that injection has fallen
to 80 per cent and in some areas is now as low as 70 per cent.
Whether you think this revolt is justified or not, the Government
would do well to show a little humility and to recognise that it represents
a significant vote of ‘no confidence’ by worried parents in the advice given
to them by officialdom.
Certainly I - a doctor who has spent years investigating the risks and
benefits of child¬hood vaccinations - am seriously concerned about this new
scheme to introduce a vaccina¬tion against the pneumococcal bacterium (one
cause of meningitis, pneumonia and septi¬caemia) in spite of the promise by
health service chiefs that a final decision will not be made without
widespread consultation.
Remember that most children under two are already routinely given no
fewer than 21 vaccinations in seven injections, including the controversial
MMR vaccine.
Do we really need a further series of vaccines at a time when so many
parents - and a significant minor¬ity of doctors and scientists work¬ing in
the field - are already deeply concerned about vaccine ‘overload’ on a
developing immune system? Indeed, there is some evidence that the increasing
number of vaccinations given to children may be a factor in the rising
numbers affected by childhood diabetes, asthma and other immune-related
disorders.
A Health Department spokesper¬son was quoted last week as saying that
a baby’s immune system has huge spare capacity.
‘The concept of a vaccine over¬load has been studied carefully and the
science says that this does not happen. A baby’s immune system could
tolerate over 1,000 vaccines.’ To me, such a brash asser¬tion is madness.
It is based on theoretical calculations and not the real world. So the
remark shows a quite astonishing complacency and arrogance about our ability
to control Nature.
Trying to conquer diseases is admirable but we cannot allow ourselves
to assume that science will always win out.
I think, for example, of the unpre¬dicted arrival on the scene of the
HIV virus in the Eighties - there is a theory that the emergence of the
virus in humans was itself caused by trials of the polio vaccine in Africa
in the 1950s - and the prolonged struggle we are now facing to under¬stand
Aids, let alone control and eventually eliminate it.
I think, too, of the unexpected horrors unleashed by the drug
thalidomide a generation ago and, more recently, of the rash Govern¬ment
reassurances over BSE right up until the announcement that yes, there was a
link between mad cow disease and a fatal degenera¬tive brain disease in
humans.
Of course, if we knew that the vaccinations were completely safe and
highly effective, these worries would not arise. No sensible person, lay or
specialist, could then have any reasonable objec¬tions to mass vaccination
programmes directed at protecting the very young.
But things are not that simple. The harsh truth is that there is no
such thing as a risk-free vaccination.
Vaccinations are not completely safe (no medical intervention ever is)
and many are less effective than health officials would have us believe.
When I was a young doctor, vaccinations were given to combat a number
of diseases which were both common and deadly serious - diphtheria and
smallpox, for exam¬ple - and that approach made perfect sense. But most of
those diseases, which commonly killed or maimed large numbers of
young¬sters, have largely disappeared, partly due to vaccination but mainly
due to better health, nutrition and housing.
What we are left with are a number of others; common dis¬eases such as
chickenpox - a mild illness that is very rarely serious - and further
diseases which are serious but thankfully rare.
This is the context in which the Government intends to introduce its
new programme of early child¬hood vaccination against the pneumococcal bug,
one cause of meningitis, septicaemia (blood poisoning) and pneumonia.
At which point we should ask three basic questions.
Is this particular new vaccina¬tion worth having? Does it work? And
finally, is it safe? We should look first at the scale of the problem it is
supposed to address. Children under five have a one-in-7,000 chance of
getting a serious pneumococcal infection - such as meningitis or poisoning -
in any one year. Of those who do contract such infections, one in five will
die and one in five will be permanently disabled.
Of course, the death of any child is a tragedy, as is the possibility
of continuing disability. As a doctor, I see the devastating impact this can
have.
But when you look at figures critically, you have to say that the
death of children from meningitis or septicaemia is, thankfully, a pretty
rare event.
The next question is: does the vaccine work? The answer must surely be
‘not very well’. Estimates are that it would be effective in 66 per cent of
cases. That means a one-in-three chance that your child will not be
protected by the vaccine.
Finally, and crucially: is the new vaccine, which the Government is
embracing so enthusiastically on behalf of our children, really safe? The
truth is that I don’t know and neither does anybody else, whatever claims
the powers-that¬-be might choose to make.
What we do know is that in the U.S., where the vaccination is already
in use, parents and doctors have reported 117 deaths relatively soon after
vaccination. There is no proof that vaccination was the cause, but the
deaths remain obstinately unexplained.
Given that there is no widespread, life-threaten¬ing epidemic to be
fought, we should surely err on the side of caution. The truth is that
proper, long-term, follow-up research has not been done, either here or in
America.
The reason is that really convincing research would involve giving a
control group of young children an inert or lifeless form of the vaccine (a
placebo), and observing how they got on over a number of years, compared
with those who had been given the active vaccination.
This research - though normally demanded of any new drug - is just not
done with new vaccines, for obvious ethical reasons.
But suppose such research was permitted and it was demon¬strated that
some lives had indeed been saved by vaccination but that others who had also
received it had died or suffered devastating side-effects.
What possible conclusion could you draw? I am not an enemy of
vaccina¬tion. Indeed, I strongly support some vaccinations and I tell my
patients so. But I do feel that to introduce a new vaccination campaign now,
without strong cause, is grossly irresponsible.
I urge ministers to think again while there is still time.
? Dr Richard Halvorsen is a GP in London.
* * *

COMMENTARY
On the NIH Scandal

By the Alliance For Human Research Protection (AHRP) A New York based
advocacy organization for promoting openness and full disclosure.
http://www.ahrp.org

Scientists at the nation’s premier research centers who violate
ethical and legal requirements and use underhanded recruitment tactics, pose
a very real and present threat to public safety: “hundreds, perhaps
thousands, of patients in NIH experiments made decisions to participate in
experiments that often carry risks without full knowledge about the
researchers' financial interests.”
The scope of ethical / legal violations and corrupt human recruitment
practices by researchers at America’s premier medical research institutions
is reaching the proportions of a tzunami. Self-regulation and peer review
have proven about as reliable at ensuring ethical and scientific integrity
as expecting the Mafia to vouch for the honesty of one of its own…
It will take more than pledges and promises by the director of NIH—it
will take more than TALK about “transparency” to restore moral integrity.
It will take a law accompanied by specified penalties to fit the crime—like
the Sarbanes Oxley law [regulation of financial practice and corporate
governance to protect investors. –ed.].
And most important, it will take an external enforcement mechanism to
keep scientists honest. Say, a “corrupt science practice” division at the
Department of Justice. It will also require effective whistleblower
protection laws.
* * *

TREATMENT

SPECIAL REPORT: Promising Future With ABA With a Successful Autism Program
In Place, CA Parents Fear Having Their Children Removed If They Don't Show
Progress

[Stockton is in northern California, south of Sacramento. By Jennifer
Torres for the Record. Thanks to La Donna Ford.]
http://www.recordnet.com/articlelink/010905/news/articles/010905-gn-1.php

Educating Autistic Children Parents pour their hopes and San Joaquin
County educators pour thousands of dollars every year into applied behavior
analysis, an intensive therapy for autistic children that is widely regarded
as one of the most promising treatments for the neurological disorder.
Autistic children must meet annual criteria to avoid being removed
from their applied behavior analysis programs, known locally as Early
Intensive Behavioral Treatment.
The purpose of the therapy is to help autistic children develop
language and move into a regular classroom. If the child is not making
progress toward that goal, the treatment no longer is appropriate, educators
said.
Parents disagree. There are many measures of progress, they say, and
to remove a service that is helping an autistic child learn would be wrong.
Tracy parent Gia McElroy recalled an analogy she said aptly describes
the situation: “You have two children with tumors the size of oranges. You
decide to give them both chemo because that's the best treatment for what
they have.”
After a time, one child's tumor shrinks to the size of a pingpong
ball, and the other to the size of a grape, said McElroy, whose 6-year-old
son, GJ, is autistic.
“Do you then say to the kid who has the bigger tumor, 'Sorry, you're
just not progressing fast enough. We'll find you another treatment. This one
is no longer appropriate'?”
For many autistic children, behaviors as simple and usually innate as
giving eye contact or answering to one's name need to be taught -- and
taught in a highly systematic way that divides learning into small steps,
usually overseen by one tutor per child. The treatment costs between
$50,000 and $60,000 per child per year. It is worth it, educators say,
because in this county, 47 percent of children in early intensive treatment
programs eventually are able to go public schools with nondisabled students.
As for the rest, “we make progress with all children,” said Joseph
Morrow, whose Sacramento-based company, Applied Behavior Consultants, works
with the state's regional centers and school districts to provide therapy to
autistic children in Los Angeles, Sacramento and San Joaquin counties.
California's 21 regional centers are private, nonprofit agencies that
coordinate services for people with developmental disabilities.
Applied behavior analysis has fostered the kind of progress that
allows a once-silent and seemingly unreachable child to attend a
neighborhood school to learn alongside nondisabled classmates, Morrow said.
It also has allowed a girl, once prone to outbursts, to sit at dinner
with her family. It was a triumph, he said. The girl's mother cried.
Morrow said he isn't sure which type of progress is more significant.
But the goal of the therapy, at least in this county, is to help
children achieve the ability to learn and succeed in a regular classroom,
said Sandee Kludt, the San Joaquin County Office of Education assistant
superintendent who oversees special education.
In March, county education officials finalized an agreement that
details how early intensive therapy should be delivered, when children are
eligible for it and how it is funded.
+ Full story here:
http://www.recordnet.com/articlelink/010905/news/articles/010905-gn-1.php




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A Calendar of Events makes sense.
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* Whew! That's a pretty tall claim. Here are more details:
~200 editions, times 12 pages each (not 8 pages as
previously Stated), times ~20,000 circulation
comes to 48 million electronic pages per year.



* * *

CARE

Coroner To Review 10 Deaths At Ontario Adult Care Centre

[By The Canadian Press.]
http://www.herald.ns.ca/stories/2005/01/12/fCanada.html

Toronto - New concerns over the deaths of 10 residents of an adult
care centre are prompting Ontario's chief coroner to review the cases, with
the possibility of a full inquest to follow.
A team will review the circumstances surrounding the deaths that
occurred between January 2000 and November 2004 at Oaklands Regional Centre
in Oakville, Ont. - the facility where a 46-year-old autistic man went
missing in October and was later found dead in a nearby creek.
* * *

Police in Florida Say Missing Autistic Teen Has Been Found

http://www.miami.com/mld/miamiherald/10621751.htm?1c

Joel Vassell, 15, had been last seen leaving the Lowe's, 130 N.
University Dr., in a northeast direction just before 3 p.m. Tuesday.
Pembroke Pines police said late Tuesday night they had located a
missing autistic teen.
Police had searched for the teen unsuccessfully, including from the
air.
* * *

TSUNAMI

Here and Gone, Just Like That
The placid splendor of this south Asia coast belies the death and
destruction wrought by the tsunami's fleeting but brutal waves.

[By Susan Taylor Martin, SP Times.]
http://www.sptimes.com/2005/01/11/Columns/Here_and_gone__just_l.shtml

As Times photographer Kathleen Flynn and I drive along
picture-postcard beaches of Thailand's west coast, it is almost impossible
to imagine the tsunami that hit here the day after Christmas. Now, the
waters of the Andaman Sea are as smooth and glistening as the finest Thai
silk.
Everyone we talk to says the same - within minutes after the last,
monstrous wave vented its fury, the water returned to its calm, clear state.
All my life, I have had what psychologists say is a familiar anxiety dream
at times of stress - the ocean suddenly rising to preternatural heights. But
now that I am here, where a tsunami hit, I can barely imagine what it must
have been like to see the ocean coming relentlessly toward me.
The devastation is proof this is no dream. In Khao Lak, north of where
we are staying on Phuket Island, the waves must have reached unbelievable
heights. A large police patrol boat sits on high ground more than a mile
inland, swept there by the waves. On the morning of Dec. 26, it was one of
the vessels guarding the coast as the autistic 21-year-old grandson of the
king of Thailand jet-skiied nearby. He was killed. Now, we hear, the
government plans to leave the cruiser there and turn the area into a
national monument.
A few miles away, workers are draining an abandoned tin-mining lake. A
Bangkok-Phuket passenger bus was traveling along the highway when the waves
dumped it in the lake. Forty passengers reportedly drowned; the search for
bodies continues.
A jarring sight: So many people have come to watch that an ice cream
vendor is doing a brisk business by lakeside, selling Nestle creamsicles to
the legions of gawkers.
Most of the luxury resorts at Khao Lak are gone, along with hundreds
of Swedes, Norwegians and other tourists who went to the beach that fine,
hot morning with no idea this would be their last. At one place, a huge,
overturned truck sits in what used to be the lobby; elsewhere, an American
Standard toilet bowl is all that is left of a luxury room.
On the way here, we flew Thai International Airways from London. I
thumbed through the in-flight magazine, obviously published before Dec. 26,
and saw an item about a new restaurant at the JW Marriott hotel in Bangkok.
The restaurant's name is Tsunami - “a large destructive wave,” the
article helpfully explained.
* * *

EVENTS

On Autism One Radio - Thursday, January 13, 10:30 am - 11:30 ET

www.autismone.org/radio

Teri Small will interview Mark Geier, MD, PhD. Dr. Mark Geier and his
son David were the first and only independent researchers allowed access to
the Vaccine Adverse Events Reporting System (VAERS). Their findings and
published papers sent shock waves through government and the medical
community.
Teri’s in-depth interview will explore some of the research conducted
by the Geiers and discuss some of their latest projects, including the
Geiers' new treatment theory as recently published in Medical Hypotheses.


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request. Articles may not be further reprinted or used commercially without
consent from the copyright holders. To find the copyright holders, follow
the referenced website link provided at the beginning of each item.
_________________________________________________________________
Lenny Schafer, Editor mailto:edit@... Edward Decelie Debbie
Hosseini Richard Miles Ron Sleith Kay Stammers