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SCHAFER AUTISM REPORT "Healing Autism:
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FOR DEC UPDATE
TREATMENT
* Healing Harmonies
EVENTS
* Autism & the Environment: Exploring a
Connection
* Autism Summit Conference LIVE via Web Cast
Today
AWARENESS
* Government Mapping Out a Strategy to Fight
Autism
* Three Part Series: Poisons in Our World
* Autism on the Rise - Quebec Agencies
Convene to Attest to
this Disturbing
Trend
ADVOCACY
* A Congressman’s Compelling Reply to a
Seriously Flawed
Government Vaccine Study
CARE
*
TREATMENT
Healing Harmonies
Musicians, teachers and
therapists use tunes to aid ailing people
[By Beth Cross for the
Caller-Times.] http://www.caller.com/ccct/health_and_fitness/article/0,1641,CCCT_886_243466
3,00.html
For everyone who has ever cranked up a
rock song to stay awake on the road late at night or indulged in a slow ballad
to relax and unwind, it's no mystery that music has an effect on our moods and
our energy.
But what about our
pain, and our ability to communicate? Music therapists know that song
and rhythm can have a profound effect, easing pain for patients in the
hospital, helping autistic patients express themselves better verbally, and
aiding people in the expression of feelings.
“What's interesting is the reason why
they come,” said Dr. Janice Dvorkin, a licensed
psychologist practicing music therapy in
A recent study at the University of Texas Health Science Center at
“It's not just a luxury, but rather it
can change the biology,” Dvorkin said. “So if there
are deficiencies, it helps those parts of the brain.”
James DeSola,
who has non-Hodgkin's lymphoma, said he can usually sleep well in cooler
weather, but that with the chemotherapy drugs he takes, it's hard now to relax
or even find a comfortable sleeping position.
Music has been DeSola's
relief, and using a CD by his friend and local musician Debbie Sewell has
helped him relax.
“I wasn't sure how it would work, because
music and TV are usually a distraction when I'm trying to sleep,” DeSola said. “But with the steps it takes you through, I
get about halfway through, and then I can turn it off and go to sleep. It just
really puts you in a relaxed mood.”
Sounds for those in pain
Sewell, who grew up in a family of
musicians, said she was inspired by her brother, a composer who wrote music
specifically for people hurting or in need. Ten years after her brother died of
AIDS, Sewell composed a tape of music, prayer and Scripture for a friend of
hers who had breast cancer.
“She called me when she got better, and
said you should do more of these,” said Sewell, who recently released her
second CD, “Quiet Nights,” which combines music therapy with Scripture and
prayer.
Sewell stresses she does not have a
degree in music therapy, but has a background in music, spiritual care and hospice
work.
What's behind the music
Music therapists are trained to work
one-on-one with people, and they understand why musicians not trained in the
science of how music affects the brain can help people, said Dvorkin, who is also an associate professor of music
therapy at the University of the Incarnate Word.
“The field of creating music has just
grown in leaps and bounds,” she said. “Some people who do it don't know why it
happens; we know why it occurs.”
Kenja Johnson
is using music therapy in yet another setting: the classroom. As music therapy
specialist for the
“There are so many skills you have to
have just to perform music,” Johnson said.
Different applications
She said music also helps bring students
with autism, learning disabilities and physical handicaps together with their
other classmates through choir concerts.
Different situations present different
goals for each type of music therapist.
“They work with the same clinical goals
everyone else works with in the areas they are working in, and know how to use
music to achieve those goals,” said Dvorkin.
A new function of music therapy in
hospitals is using music with patients prior to operating, so not as much
anesthesia is needed. Music has also been used with pregnant women for pain
management during labor, and in psychiatry to help people organize their
thoughts.
“The brain picks up structure and
organization, and it helps with verbal expression,” Dvorkin
said.
This can be particularly helpful with
autistic patients, who struggle with verbal communication, she said.
Used in intensive care units
Some hospitals also use music therapy in
the Pediatric Intensive Care Units. Laura Davis, assistant vice president of
pediatric services at Driscoll Children's Hospital, said parents are sometimes
encouraged to record their own voice singing a favorite song or reading a
story.
“Parents can't be at the bedside 24-7,”
Four copies of Sewell's CD have also been
donated to the unit for patients and parents to use.
In a hospital setting, a parent's voice
also helps get rid of the beeps and buzzes of hospital machines and makes the
transition of going home easier on the child, Dvorkin
said.
While working in hospice care, Sewell
said what she heard most often from people was that they were struggling with
sleep, fighting depression or were frightened and anxious.
“When you live life long enough, you
experience times when you don't know how to pray or can't sleep at night,”
Sewell said. “I meet them where they are, and take them to where they need to
be (through music).”
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* * *
EVENTS
Autism & the
Environment: Exploring a Connection
A free educational forum
Please join The Alliance for
a Healthy Tomorrow
Learn
How environmental chemicals may alter
brain functions and brain growth. How exposure to environmental toxins can
influence the neurological health and development of children. The possible interaction between known genetic links and
environmental factors that may contribute to the lifelong developmental
disorder of autism.
Speakers include
Richard Deth,
PhD, Professor of Pharmacology at Northeastern University
Martha Herbert, PhD, MD,
Mark Blaxill,
Director of Safe Minds
Joel Tickner,
ScD,
Sponsored by
The Alliance for a Healthy Tomorrow, The
Autism Resource Center, Autism Community Resources, Autism Society of America
(Mass. chapter), the Leominster Special Education Parent Advisory Council, and
the Lowell Center for Sustainable Production. For more information
Contact Tracy Carlson (401) 331-6972 or
tcarlson@cleanwater.org
* * *
Autism Summit Conference
LIVE via Web Cast Today
You can view the conference LIVE or
archived, via web cast, by following instructions on this link: http://www.tvworldwide.com/events/nimh/031119
.
All general sessions will be web cast, as
will one of the breakout groups for each session. The other breakout groups will be available
for archived viewing.
In addition, you will find updated
information on this conference, including the agenda and reports following the
conference, on the following
website: http://www.nimh.nih.gov/autismiacc/events.cfm
* * *
AWARENESS
Government Mapping Out a
Strategy to Fight Autism
[By Jane Gross.]
http://www.nytimes.com/2003/11/19/health/19AUTI.html
Propelled by the skyrocketing number of
diagnoses of the perplexing brain disorder autism in children, federal
officials have for the first time mapped out a long-term, interagency plan to
deal with the problem.
The plan includes objectives like the
development of teaching methods that will allow 90 percent of autistic children
to speak; the identification of genetic and nongenetic
causes of the condition; and adequate services for all afflicted children in
the next 7 to 10 years.
The plan, which is to be
unveiled at a major autism conference in
Few of the nearly 150,000 autistic
children and young adults now getting special education services under federal
law will benefit significantly, experts say, since the most effective treatment
involves early, intensive behavior therapy, which is poorly understood and in
limited supply.
Autism is a disorder with a wide range of
symptoms sometimes so mild as to let a child function in a regular classroom
with special services and at other times so severe that a child is mute and
institutionalized.
The three-pronged plan sets goals for
more coordinated biomedical research, earlier screening and diagnosis, and
effective therapy. The plan demands, for the first time, collaboration between
scientists, clinicians, educators and policymakers in an array of federal
agencies.
“Millions of people need help,” said
Robert L. Beck, president of the Autism Society of America, the nation's oldest and largest autism advocacy group. “And this
is a new opportunity and a very exciting one.”
The need is enormous. According to
federal education officials, in 1992-93, fewer than 20,000 of the nation's
nearly five million special-education students, ages 6 to 21, were considered
autistic. Ten years later, nearly 120,000 of six million special-education
students had autism. That does not count the 19,000 children 3 to 5 receiving
autism services under federal law, or those younger whose numbers have not been
tallied.
Nobody knows the cause of the surge,
although epidemiologists suspect it is largely a result of refined diagnosis
and public awareness. That does not change the dimensions of a problem that strains
schools, medical services and families. Nor does it affect forecasts of growing
caseloads for decades to come.
Dr. Fred R. Volkmar
of the
Twenty years ago, Dr. Volkmar
said, when he told people he worked with autistic children, they often misheard
him and thought he had said “artistic.” They had never heard of the disorder,
which typically affects the ability to communicate, form relationships with
others and respond appropriately to the external world.
By contrast, Dr. Volkmar
said, it is rare these days not to know someone with an autistic child. He now
sees children as young as 12 months, gets referrals from day-care centers and
has a two-year waiting list. Were screening techniques to improve so that
diagnoses could be made in infants, he would be hard-pressed to find schools,
trained behavioral therapists or other services for them.
The plan, which will be reviewed by the
Interagency Autism Coordinating Council, established by the Child Health Act of
2000, is presented in broad brush strokes, with few details and no price tags.
It was drafted by scientists to assess the state of autism research and
identify the roadblocks that might be hindering progress in understanding the
cause and the best treatment options.
The plan lays out a timeline, in
increments of 1 to 3 years, 4 to 6 years and 7 to 10 years and then ranks goals
according to the likelihood of achieving them. Realistic goals in each of the
three stages include the development, evaluation and institution of effective
treatments, in collaboration with the Department of Education.
More challenging goals, by contrast,
include finding effective drugs for the symptoms of autism and identifying
environmental factors that may contribute to the development of the disorder.
"The idea is to be challenging
everyone in the field to be reaching for the best we can possibly do,"
said Dr. Steve Foote, the director of neuroscience at the National Institute of
Mental Health, which was designated the lead agency by the Child Health Act.
The legislation, passed in the
Some parents are likely to be frustrated
by the plan's suggestion that it will take at least seven years to provide
treatment for all who need it. Mr. Beck of the Autism Society of America hoped
that long-term research and improved services were not mutually exclusive.
"There are good practices out there," he said, "just not enough
of them.”
He added: "And there's no money on
the services and treatment side. What do we do with the kids for the next 7 to
10 years? We have to do both. You cannot just throw away a generation of
children.”
Many researchers and clinicians in the
field credit the advocacy community with galvanizing the government, following
in the footsteps of AIDS advocates in the 1980's. There are several such organizations,
all included at the conference, that have shifted emphasis from looking for a
cure to also fighting for a more systematic study of treatments and more
services for children.
There is wide agreement that intensive
behavioral therapy, which can include breaking a simple task like hand washing
into a dozen component parts, beginning at the earliest possible age, is highly
effective for many children. What remains a mystery is which children benefit
and why, which techniques work best and whether early improvement is sustained
over time, said Dr. Catherine Lord, director of the Autism and Communications
Disorder program at the
Parents of autistic children are stymied
by how difficult it is to find properly trained behavioral therapists. Like
others on the scientific side, Dr. Volkmar said that
was because the Department of Education, under President Bush, had been "a
real stumbling block." Mr. Beck agreed and said he was "quite excited
to see them at the table.”
Education officials denied a lack of
interest. Robert Pasternack, assistant secretary for
special education, said Mr. Bush had been generous in his financing requests
for educational services for the disabled. Mr. Pasternack
acknowledged a "critical shortage of special education teachers" and
said the government was eager to "help states recruit and train
them."
* * *
Three Part Series: Poisons
in Our World
[From Ivanhoe.com
Newswire.]
Poisons in Our World: Moldy Schools (Part 1 of
3)
(Ivanhoe Newswire) -- The statistics are
staggering. Twenty million people in the
Poisons in Our World: Leaded
Nation (Part 2 of 3)
Poisons in Our World:
Clusters of Harm (Part 3 of 3)
* * *
Autism on the Rise - Quebec
Agencies Convene to Attest to this Disturbing Trend
http://www2.ccnmatthews.com/scripts/ccn-release.pl?/current/1117100n.html
Various government and community
organizations faced with this growing demand have accepted to address this
problematic and will report on the growing prominence of individuals with
autism amidst their organization. L'Office des Personnes Handicapes du Quebec, the Regroupement des
CLSC, Readaptation Centres,
and the Canadian Autism Society are amongst the representatives of government
agencies and community organizations that will be assembled at the press
conference. Through their accounts, this panel of specialists will illustrate
the growing rate of autism and PDDs in
While the increase of autism and PDDs is being witnessed by government and community
organizations, various questions remain unanswered. Why so many children are
being increasingly affected? What is causing this dramatic growth? What needs
to be done to avert the perpetuation of this epidemic? Bio-medical research and
treatments are long overdue to understand the causes of this disabling disorder
in order to halt its pandemic proportions.
In response to this urging need, the 4th
International Medical Conference on Autism - Autism 2003: Understand, Act, and
Heal - will take place on November 21st and 22nd 2003 at Place Dupuis of the
Hotel des Gouverneurs.
_______________________________________________________
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* * *
ADVOCACY
A Congressman’s Compelling
Reply to a Seriously Flawed Government Vaccine Study
Although the latest study found no such
association, critics are suggesting that the results were manipulated to
protect the government and vaccine manufacturers. Other public health activists
say the results appear to have been “watered down” from the original analysis,
and point out that the lead author of the study is now employed by vaccine
manufacturer GlaxoSmithKline.
U.S. Rep. Dave Weldon, who is also a
physician, wrote a letter to the Centers for Disease Control and Prevention
(CDC) Director Dr. Julie Gerberding calling for an
independent review of the study. His letter follows.
Yahoo! News http://story.news.yahoo.com/news?tmpl=story2&u=/nm/20031103/hl_nm/health_vac
cines_dc
From: Dr. Weldon
To: Julie L. Gerberding, M.D., M.P.H.
Director, Centers for
Disease Control and Prevention
Dear Dr. Gerberding:
I am writing to follow up on our
conversation about the article (Verstraeten et. al.,)
that will be published in the November 2003 issue of Pediatrics. I have
reviewed the article and have serious reservations about the four-year
evolution and conclusions of this study.
Much of what I observed transpired prior
to your appointment a year ago as the Director of the Centers for Disease
Control and Prevention (CDC). I am very concerned about activities that have
taken place in the National Immunization Program (NIP) in the development of
this study, and I believe the issues raised need your personal attention.
I am a strong supporter of childhood
vaccinations and know that they have saved us from considerable death and
suffering. A key part of our vaccination program is to ensure that we do
everything possible to ensure that these vaccines, which are mandatory, are as
safe as possible. We must fully disclose adverse events. Anything
less than this undermines public confidence.
I have read the upcoming Pediatrics study
and several earlier versions of this study dating back to February 2000. I have
read various e-mails from Dr. Verstraeten and
coauthors. I have reviewed the transcripts of a discussion at
A review of these documents leaves me
very concerned that rather than seeking to understand whether or not some
children were exposed to harmful levels of mercury in childhood vaccines in the
1990s, there may have been a selective use of the data to
make the associations in the earliest study disappear. While most
childhood vaccines now only have trace amounts of mercury from
thimerosal-containing vaccines (TCVs), it is critical
that we know with certainty if children were injured in the 1990s.
Furthermore, the lead author of the
article, Dr. Thomas Verstraeten, worked for the CDC
until he left over two years ago to work in
The first version of the study, produced
in February 2000, found a significant association between exposure to
thimerosal-containing vaccines and autism and neurological developmental delays
(NDDs). When comparing children exposed to 62.5 µg of
mercury by 3 months of age to those exposed to less than 37.5 µg, the study
found a relative risk for autism of 2.48 for those with a higher exposure
level. (While not significant in the 95 percent confidence interval for autism,
this meets the legal standard of proof exceeding 2.0.) For NDDs
the study found a relative risk of 1.59 and a definite upward trend as exposure
levels increased.
A June 2000 version of the study applied
various data manipulations to reduce the autism association to 1.69 and the
authors went outside of the VSD database to secure data from a Massachusetts
HMO (Harvard Pilgrim, HP) in order to counter the association found between TCVs and speech delay. At the time that HP's
data was brought in, HP was in receivership by the state of Mass., its computer
records had been in shambles for years, it had multiple computer systems that
could not communicate with one another (Journal of Law, Ethics and Medicine
Sept. 22, 2000), and it used a health care coding system totally different from
the one used across the VSD. There are questions relating to a significant
underreporting of Autism in
In June 2000 a meeting was held in
The final version of the study concludes
that "No consistent significant associations were found between TCVs and neurodevelopmental
outcomes," and that the lack of consistency argues against an association.
In reviewing the study there are data points where children with higher
exposures to the neurotoxin mercury had fewer developmental disorders. This
demonstrates to me how excessive manipulation of data can lead to absurd
results. Such a conclusion is not unexpected from an author with a serious,
though undisclosed, conflict of interest.
This study increases speculation of an
association between TCVs and neurodevelopmental
outcomes. I cannot say it was the author's intent to eliminate the earlier
findings of an association. Nonetheless, the elimination of this association is
exactly what happened and the manner in which this was achieved raises
speculation. The dialogue at the Simpsonwood meeting
clearly indicates how easily the authors could manipulate the data and have
reasonable sounding justifications for many of their decisions.
The only way these issues are going to be
resolved--and I have only mentioned a few of them--is by making this particular
dataset and the entire VSD database open for independent analysis. One such independent
researcher, Dr. Mark Geier, has already been approved
by the CDC and the various IRBs to access this
dataset. They have requested the CDC allow them to access this dataset and your
staff indicated to my office that they would make this particular dataset
available after the Pediatrics study is published.
Earlier this month the CDC had prepared
three similar datasets for this researcher to review to allow him to reanalyze
CDC study datasets. However when they accessed the datasets--which the researchers
paid the CDC to assemble--the datasets were found to have no usable data in
them. I request that you personally intervene with those in the CDC who are
assembling this dataset to ensure that they provide the complete dataset, in a
usable format, to these researchers within two weeks. The treatment that these
well-published researchers have received from the CDC thus far has been abysmal
and embarrassing. I would also be curious to know whether Dr. Verstraeten, an outside researcher for more than two years
now, was required to go through the same process as Dr. Geier
in order to continue accessing the VSD.
You have not been a part of creating this
current situation, but you do have an opportunity to help resolve this issue
and ensure that confidence and trustworthiness in the CDC and our national
vaccination program is fully restored. I would ask that you work with me to
ensure that a full, fair and independent review is made of the VSD database to
fully examine this matter. I would like to meet with you at your earliest
convenience to move this process forward.
Thank you for your consideration. I look
forward to working with you on this urgent matter of great importance to our
nation's most precious resource, our children.
Sincerely, Dave Weldon,
M.D.
Member of Congress
* * *
CARE
Families hard-pressed to
find low-cost therapy replacement
[By Michele Ames, Rocky
Mountain News.] http://rockymountainnews.com/drmn/state/article/0,1299,DRMN_21_2439553,00.ht
ml
One of the few centers in
The
The Thons - Ernie, Julianne and their
8-year-old son, Evan - are one of the families left in the lurch.
Evan entered the center about a year ago
and made immediate progress, Julianne Thon said. For instance, the family can
now take Evan to the store without him grabbing at other shoppers. Through the
center, he's learned social norms.
The Thons will have to scale back Evan's
treatment because they won't be able to afford as much treatment.
“Evan will be getting about one-sixteenth
of what he needs based on what we can afford,” Julianne Thon said. “We are
rapidly losing hope for Evan to become a contributing member of our society. We
are losing our son.”
This year, the Thons have paid about
$12,000 for speech therapy alone at the center, which rolled together therapies
such as speech and social behavior in one place. They've spent all the money
they saved for a down payment on a house and now are renting. Other families at
the center have taken out second and third mortgages on their homes to pay for
the treatment, they say.
Most programs to treat the condition cost
between $20,000 and $60,000 a year, advocates say.
Dr. Pat Rydell,
who started the center in July 2002, designed it as a lower-cost, comprehensive
treatment center. But the center began having financial problems as hundreds of
grant applications produced little money because corporations scaled back their
giving in the declining economy, he said. The center finally closed in August.
And many of the center's advocates argue
that state funding is needed to keep these centers going. They say they lost
their best chance to prove that in 2000, when the state legislature approved
and then Gov. Bill Owens vetoed a plan to expand the state's Medicaid program
for -autistic children.
The proposal would have started a small
pilot program for 25 children whose parents would have received financial help
regardless of their income level.
Owens vetoed the plan because the federal
government had indicated it likely would not approve spending Medicaid money
for the pilot program, according to Dan Hopkins, the governor's press
secretary.
But even with the veto,
This year,
“There are a number of programs that the
state has today that provide help for families with autistic children,”
He added that the governor is willing to
work with families to see what else might be done to help.
State health officials can't yet say how
many children in
“This is a diagnosis that is notoriously
difficult to make and to be consistent about making,” said Dr. Lisa Miller, who
is leading the research team for the Colorado Department of Public Health and
Environment.
“It's not a condition that's diagnosed in
a hospital. It's not a condition that we have a lab test for. It's a condition
diagnosed by experts, and there aren't a lot of them.”
Still, many families who are watching
their children grow up with the condition feel they are running out of time.
Betty Lehman is the executive director of the Autism Society of Colorado and
the mother of 15-year-old Eli, who has been diagnosed as having autism.
“If we want to put our hands over our
eyes and ears, then we're going to end up with a state full of these children
getting little treatment,” Lehman said. “And these kids are going to become
more and more of a burden on the public school system and other services as
they grow. With treatment, there's no reason for that.”
_______________________________________________________
PROMOTE YOUR MEETINGS, CHAPTER OR
CONFERENCE
No Cost to List
In the Largest, Widest Read "The
Autism Calendar"tm
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NOTE CALENDAR DEADLINE NOV 25 FOR
DECEMBER UPDATE
_______________________________________________________
_________________________________________________________________
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