I Don't Believe My Wife Could Murder Our Autistic Son, Brampton Father
South Carolina Student Mortally Wounded
Judge Orders Retrial in Travolta Case
Call for Abstracts and Panels International Meeting for Autism
Massage Therapy Helps EVENTS
Controversial Autism Conference Got Funds From 'Sick Kids'
AutismOne & Autism Canada Conference 2009
A Brief History of FEAT and Autism Services in Sacramento
'Shot In The Arm' For Special Ed in New Jersey
Epilepsy: A Fight For The Cure
Katie Couric Reports On The Movement To Raise Awareness And Research
Funds For This Disease
(CBS) Susan and David
Axelrod's oldest daughter Lauren had tried 23 different medications and
an unsuccessful brain surgery to control her epilepsy by the time she
When doctors could not stop her
dangerous and devastating seizures, the Axelrods realized that they
would have to do something themselves to help Lauren. Today, they are
fighting for a cure for epilepsy by raising awareness and funding for
Susan and David, President Obama's
senior advisor, appeared in a Katie Couric 60 Minutes report on
epilepsy, broadcast Sunday.
"Why can't they stop a seizure? I mean,
this is a disease that's been known since Biblical times. The research,
and the ability to treat and control is so primitive," says Susan.
David describes what it is like to live with the constant threat of
seizures. "Epilepsy is like terrorism of the brain. You don't know when
it's going to strike, where you're going to be," he tells Couric.
Epilepsy affects nearly three
million Americans, more than cerebral palsy, Parkinson's and multiple
sclerosis combined. What's more, the disease strikes and kills about as
many in the U.S. each year as breast cancer, but gets five times less
federal funding for research than breast cancer receives.
In addition, there is a new population
at increased risk of developing epilepsy: veterans of the wars in Iraq
and Afghanistan who have suffered serious traumatic brain injury.
Eleven years ago, Susan Axelrod helped
found CURE, a non-profit organization dedicated to raising awareness
for epilepsy and generating funds for research into new treatments and
a greater understanding that could one day lead to a cure. One of the
scientists whose work is partly funded by CURE is Dr. Frances Jensen at
Children’s Hospital in Boston.
Asked by Couric if she is maddened by
the lack of attention paid to epilepsy, Jensen replies "Yes. People
don't realize that it's happening to two in 100 people, and even more
than that, in five or six out of every 100 children."
There is some progress being made. A new
device implanted in patients' brains has reduced seizures in some
patients in an ongoing clinical trial.
And Lauren Axelrod, now 28, finally
found a drug that made a difference for her, controlling her seizures
and improving her life. "There was a time when we have given our right
arm for just a week of good days," says David. "And now, she has them
consistently. So, you know, that's a big victory."
Ontario’s NDP Leader Andrea Horwath is
citing more troubling facts concerning the McGuinty government’s
approach to treating Ontario children with autism.
“The government is cutting off more
children from IBI when schools are not able to provide the therapy.
Instead of funding treatment, the government is allowing waiting lists
to balloon and children to languish,” Horwath said in the Ontario
Legislature today after revealing the government’s latest quarterly
numbers for April to June, 2009.
Compared to the previous quarter, 1,649
children are now waiting for IBI therapy. That’s 136 more than
previously reported (1, 513) and a 9 per cent increase in just three
“When will parents see adequate service
levels and proper funding for children’s autism treatment?” Horwath
demanded of Minister of Children and Youth Services Laurel Broten. “It
has been six years. These children and these families cannot wait any
longer for this government to get its act together when it comes to the
The government is cutting off more
children from IBI even though schools are not able to provide the
therapy, Horwath said. The latest quarterly statistics from the
ministry show another 114 children were abruptly cut off.
“The regular quarterly numbers don’t
lie. Why are more children with autism waiting for treatment, and why
are more children having their autism suddenly cut off and terminated?”
Horwath said. “The McGuinty government’s autism program is not living
up to the Premier’s promise of ensuring children with autism receive
treatment regardless of their age."
Horwath, the MPP for Hamilton Centre,
recently brought the autism file into her portfolio as Ontario’s NDP
Critic for Children and Youth Service.
• • •
I Don't Believe My Wife Could Murder Our Autistic Son, Brampton Father
A 51-year-old Brampton woman appeared in
court this morning, charged with the murder of her 15-year-old autistic
Police were called yesterday morning to
a hotel in Mississauga, where they found the body of Tony Khor, 15,
with "obvious signs of trauma," according to Peel Regional Police.
The boy's mother, Seow Cheng Sim, 51,
was arrested at the hotel and is charged with first-degree murder.
The boy's father, Boon Khor, told Global
News he had a fight with his wife on Friday night at the family's home
and she left with their son on Saturday. He said they fought often, but
would always return home after a cooling-off period.
He says the couple have been married for
more than 20 years and doesn't believe she could have murdered her son.
Tony Khor was a low-functioning autistic
who attended a special program at St. Marcellinus School in
Mississauga. Students at the school told Global News on Monday that
they were told a classmate died in an accident over the weekend. The
school's flag was also at half staff.
Boon Khor says his son loved video games
and puzzles, but like many autistic children, did not talk very much.
Seow Cheng Sim will be back in court on
Trevor Varinecz, 16, who was
described by friends as a compassionate, caring and happy student, was
shot and killed after confronting Horry County Lance Cpl. Marcus
Rhodes, the resource officer, with two knives Oct. 14.
The motive for the Carolina Forest
incident hasn’t been released by agents with the State Law Enforcement
Division, who are continuing their investigation.
Varinecz reportedly had Asperger’s
syndrome, which is a developmental disorder that resembles autism. He
was shot five times, once fatally to the chest, after stabbing Rhodes,
who was justified in his actions, according to 15th Circuit Deputy
Solicitor Fran Humphries.
The NAACP raised questions about the use
“There are serious questions that must
be aggressively investigated,” the NAACP said in a statement. “Was the
officer trained in the techniques to work with individuals with autism,
or mental illness? Did the officer use all available means to contain
the situation without using deadly force? Should school resource
officers be allowed to carry guns in schools?"
Those are legitimate questions. And it’s
also legitimate for parents across the Pee Dee to be asking if school
districts are reviewing their safety procedures in wake of the
incident. They should be.
+ Read more: is.gd/4D75Y
• • •
Judge Orders Retrial in Travolta Case
Lawmaker's remark causes judge to order new trial
Nassau, Bahamas (AP) - The trial of two
people accused of trying to extort John Travolta following the death of
his son in the Bahamas has ended in a mistrial after a lawmaker
suggested the still-deliberating jury had acquitted one of the
Senior Justice Anita Allen said she was
reluctantly ordering a new trial "in the interest of justice" because
the politician's statement, in a speech broadcast on television and
radio, gave the appearance of an improper leak from the jury room.
+ Read more: is.gd/4DtOS
• • •
Call for Abstracts and Panels International Meeting for Autism Research
The IMFAR Scientific Program Committee
invites abstract and scientific panel submissions for review in all
disciplines relevant to autism research for presentation at the 2010
IMFAR meeting in Philadelphia, May 20-22. The deadline for abstract
submission is November 20, 2009. Abstracts should be submitted online
Relevant topics include but are not
limited to: etiology, risk factors, epidemiology, neuroimaging,
treatment, cognition, behavior, language, communication, diagnosis,
phenotype, genetics, animal models, education, neurology, psychiatry,
psychology, neuropathology, immunology, environment, and medical
conditions. IMFAR is a scientific meeting and only presentations based
on empirical data will be accepted.
Individual abstracts should report on
the results of a single study. The program committee will select
abstracts for either an oral presentation or a poster presentation.
+ Read more: www.sarnet.org/doc/insar.htm
• • •
Chinese Massage Therapy Helps Sensory And Self-Regulation Problems In
Children With Autism
A recent study published in the American
Journal of Occupational Therapy* by a research group from Western
Oregon University reports on a randomized controlled study evaluating
the effect of a five-month intervention directed towards improving
measures of sensory impairment, digestion and sleep in 46 children with
autism under six years of age.
The intervention, Qigong Sensory
Training (QST) is a massage intervention based in Chinese Medicine and
involves daily massage of children by parents, with trained staff
support. Improvement was evaluated in two settings: the pre-school and
home, by teachers (blind to group) and parents. Teacher evaluations
showed that children receiving the QST intervention had significant
classroom improvement of sensory impairment (p<.01), social/language
skills (p<.01), and reduction in autistic behavior
(p<.01)compared to wait-list controls.
Parent data confirmed the findings in
the teacher data, indicating that the gains had generalized across
The study is the fourth published in a
research stream exploring the role that sensory impairment plays in the
development of autism.
According to Chinese Medicine, sensory
impairment underlies both the abnormal behaviors and the delays in
learning seen in autism, and is due to several factors, including
toxicity. The massage is directed towards recovering normal sensory
function, and strengthens the child’s ability to remove toxins and
recover from toxic exposures. The intervention is promising in that it
is non-invasive, utilizes the resources most available to young
children with autism - the parents and early intervention program staff
- and results in significant reductions in parent stress relative to
caring for young children with autism.
+ Read study here: www.sarnet.org/doc/AJOT2009.pdf
*Silva, L., Schalock, M., Ayres, R., Bunse, C., & Budden, S.
(2009). Qigong massage treatment for sensory and self-regulation
problems in young children with autism: A randomized controlled trial.
/American Journal of Occupational Therapy, 63, /423-432/.
Schafer Autism Report
A branch of Toronto's renowned Hospital
for Sick Children is being criticized for funding an autism conference
whose organizers champion the discredited belief that childhood
immunization causes the neurological disorder.
The event - to start on Saturday at the
University of Toronto medical sciences building - also includes
presentations that some experts are calling unproven science, promoting
such alternative treatments for autism as homeopathy and hyperbaric
Organized by the American group
AutismOne and Austism Canada, the meeting has received $5,000 in
funding from SickKids Foundation, the hospital's fundraising wing.
Blogs designed to expose practitioners
of dubious science have railed against the event for the past two
months, questioning why a respected health-care institution would offer
its support to a group that considers vaccination of children a health
"The name of Sick Kids is worth more to
them than the money: it is a stamp of legitimacy," Scott Gavura, a
Toronto pharmacist who runs the Skeptic North blog, said in an
interview on Monday.
"Sick Kids hospital has some of the
world's most renowned autism researchers. I suspect most of them would
not be thrilled by the fact that SickKids Foundation is supporting this
Carole Duncan, a spokeswoman for the
foundation, said the grant was awarded in May after Autism Canada
submitted a detailed application.
"From our perspective, Autism Canada is
a reputable organization doing excellent advocacy work in Canada," said
Ms. Duncan in an emailed response.
"Based on our experience in working with
Autism Canada, their grant application and their reputation, we have no
reason to believe the grant is being used for anything other than
providing a respectful forum for parents, therapists, doctors,
researchers and individuals with autism spectrum disorder."
In an email sent to Mr. Gavura and
others who asked about the grant decision, the Foundation also
indicated that it takes a "neutral stance" on alternative and
complementary health care for children, and has a history of funding it.
The event's organizers were not
available for comment yesterday.
AutismOne, one of the co-hosts, is a
U.S. group whose website states prominently that "autism is caused by
too many vaccines given too soon." The vaccine-autism connection was
first promoted in a small 1998 study, but several "large and
well-conducted" studies have since unearthed no evidence to support the
notion, said Dr. Susan Bryson, a clinical psychologist and autism
expert at Dalhousie University.
+ Read more: is.gd/4DqEE
+ Conference information here:
AutismOne & Autism Canada Conference 2009
Changing The Course Of Autism In Canada
Keynote Address Martha Herbert, MD, PhD
Autism One and Autism Canada are proud
to present the inaugural AutismOne / Autism Canada Conference.
The 2-day main conference will be held
Saturday, October 31 and Sunday, November 1, preceded by a 1-day
training program for practitioners, on Friday, October 30.
Featuring over 20 of the most highly
respected names in the autism community the conference provides the
most up to date information to help your child. From implementing the
best biomedical treatments to realizing the benefits of educational
therapies to adolescence and adulthood issues the conference brings you
the answers to be your child’s most effective healer and powerful
+ Read more: old.autismone.org/?goto=canada
• • •
A Brief History of FEAT and
Autism Services in Sacramento
Autism and the Internet web exploded on
the scene at the same time in the late 1990s. The original FEAT caught
a big wave early that hasn't
subsided. This is how an autism
advocacy group, "a bunch of parents in a living room", grew and took
hold with success in Sacramento, California. – editor.
Families for Early Autism Treatment
started almost 15 years ago with a bunch of autism parents in a living
room, trying to figure out how to get ABA consulting and
services. At the time there were no local Applied Behavioral
Analysis providers, and also then – the Lovaas Institute had so few
people, they were rationed - and flown around the country.
FEAT organized two things then - a
training program for several local people to spend a summer at UCLA /
LIFE in LA, to return to Sacramento to provide services. Several of
those people still provide services here in Sacramento. The second part
was getting a grant to fund workshop programs, and then to get
continuing funding from Alta California Regional Center. This model is
still known today as the "workshop" model.
In the workshop model, parents hired
their own tutors, took a weekend of training from a LIFE consultant,
and took supervision from one of the trained lead tutors. There
was a waiting list of 6 to 12 months for that workshop, and then you
saw the LIFE consultant once a month there after. FEAT paid for the
workshop weekend, ALTA covered the tutors and consulting there after,
parents were responsible for materials, accounting, and a lot of time
in the chair. The Parents were the vendors.
About five years into FEAT's existence,
a perfect storm of talent came on the board, including Chuck Gardner,
Rick Hayes, Kathleen Berry, Nancy Fellmeth, myself and a number of
others - all with deep corporate and business experience (credit to
Gordon Hall for assembling this group). FEAT became an incubator of
projects overshadowing it's history as a support group. We started
advising other Autism groups, Lenny Schafer started the FEATNews, I
built one of the first large scale Autism Web sites, Rick, Chuck, Steve
Koyasako and I submitted a grant request and won the funding for the
Hope Project - which lead directly to the founding of the M.I.N.D.
institute – all of the FEAT Board members contributed their support and
influence to help move this project forward.
Also during that time, it became very
obvious to everyone that the model we were using was neither practical
nor scalable, not to mention quite cost inefficient. Our
conclusion was that we had to create a market for professionals to want
to come work here - to setup businesses which would service our
children - at a much earlier age, at lower cost, and without
waiting. We needed a Market Place for autism services. So we set
out to do that - FEAT purposely tried to create stable funding streams,
so a consistent set of money to fund the services would incent
professionals to work in Sacramento. FEAT also started to pursue
legislative remedy, to little avail, and began to support advocacy for
parents in direct and indirect ways.
Some efforts did not pan out well,
others with mixed results. But the end goal of having a pool of vendors
in Sacramento to choose from was quite successful. The greater
Sacramento area enjoys a very high number of vendors in comparison to
anywhere else in the country, much less the international realm.
Where FEAT was not so successful, was getting quality from most of
those vendors. The conflicting set of priorities and requirements
between ALTA, the School Districts, the legislative efforts, combined
with FEAT missing the need to define the standards up front - lead to a
lack of accountability that exists today.
One unexpected result was the decline of
workshop programs, because of the increase in vendor count and external
process. FEAT also did not expect the resulting decline of
organizational and group knowledge about what makes good ABA work, how
to hold agencies professionally accountable - and just plain interest.
The implementation knowledge shifted away from FEAT and Parents to
vendors and government agencies - and the overall quality of programs
has declined in our community as a result. More importantly, as people
took services directly from vendors and ALTA - FEAT lost it's stream of
volunteers with new energy and ideas - because people were no longer
referred to FEAT - and with it a part of the built in accountability
for quality in our community.
There are good vendors out there - most
of us here know who they are.
There are not so good vendors too. The
problem with these kinds of statements is they are so subjective. What
is acceptable to a school might not be to ALTA, what is acceptable to
ALTA, might not be to parents - assuming parents had enough knowledge
to make a reasonable judgment about the quality of services they are
Parents trained in those old "workshop"
models were required to learn ABA, to practice, and implement it, and
to fairly judge the outcomes and the personnel involved - because they
implemented the curricula and ran the programs. So if you need
help knowing what is good or not - look for those FEAT parents with
children from 10 to 17 years of age - they have been through the boot
camp and they know what works and what doesn't. And keep in mind -
FEAT has a class for educating parents -
done by parents who continue to do workshop ABA programs, even after 10
years. There is no better place to learn about the process of using ABA
- these are the parents who know how. There are so few people left
doing these programs, and there is so little interest from other
parents, that we don't do it very often any more. If there is enough
interest, we'll put them on again, but the people coming need to
understand the commitment level these parents expect. Doing ABA right,
and learning the wide and deep body of knowledge to be able to
meaningfully contribute to an ABA program takes a great deal of
commitment, not to mention the raw investment of time and energy.
We have a lot of great ABA talent in
this town, and most people don't know how deliberately FEAT nurtured
and created this marketplace. If you came from another place - you
already know how bad it is everywhere else. That said - it could be a
lot better by adding accountability for quality to both vendors and
Special-education staff and parents are
using terms like "historic moment" and "wonderful thing" to describe
how federal stimulus funds are spurring North Jersey districts to
transform programs for disabled children.
Some districts have embarked on major
overhauls: Wayne plans to reorder and consolidate early childhood
programs, in hopes of becoming a state-of-the-art magnet of such
Others are solving specific problems:
Lyndhurst has brought 20 special-education high schoolers, previously
sent out of district, home by providing classrooms and staff tailored
to their needs.
And still others — prominently Paterson
— are working to integrate special ed programs so disabled children are
provided ample opportunity to mix with "regular ed" students.
In all, over the next two school years,
New Jersey will receive $371 million in federal stimulus earmarked to
enhance such special education and preschool programs for the disabled.
The Paterson schools are receiving $7.5
million — by far the largest allocation in North Jersey — for its 2,800
special-education students in a district of about 26,000 children.
"This has been a shot in the arm to go
ahead and get some things for our students that we would ordinarily
hold off on, so I think it's very significant," said Donald Merachnik,
an interim assistant superintendent in Paterson.
"It's historic," Beth Marmolejos,
president of Wayne's Special Parents Association, said of her
district's plans, "because we are headed on the right path toward
helping these children become members of the community; to be able to
provide them with the tools, the support and the opportunity to achieve
the American dream."
Wayne intends to consolidate eight
preschool classes for disabled students — now spread among six
buildings — under one roof. School officials also anticipate some
students who attend outside programs the district pays for will be able
to return to local schools. Additionally, the plan is expected to
generate revenue to cover future costs by attracting receiving
arrangements with other districts.
Lyndhurst used about $400,000 to build
two classrooms for 20 disabled high schoolers who had attended
tuition-based programs out of district. With its own program, Lyndhurst
expects to save about $800,000 in tuition and transportation costs.
Three teachers work in each class of 10 students.
"There is more individualized attention,
and there is an ability to track these kids so they don't get lost,"
said district Superintendent Joseph Abate Jr.
+ Read more: is.gd/4DuuR
• • •
Straight from the Horse's, that is
The insert for the H1N1 (swine flu) 2009
vaccine is now posted on the FDA web site, and can be viewed here.
The following statement and other
incredulous statements appear on the first page of the insert:
"Safety and effectiveness of Influenza A
(H1N1) 2009 Monovalent Vaccine have NOT been established in pregnant
women, nursing mothers or in persons less than 18 years of age."
In addition, the multi-dose vial, which
is so much more commonly used than the single-dose vial, contains
thimerosal (which contains mercury) at 25 mcg per dose, the same amount
as in the multi-dose vial of the seasonal flu vaccine.
This information contradicts what we are
constantly being told by the media and, very often, our doctors. The
insert referenced above is for the H1N1 vaccine manufactured by CSL and
the insert for the same vaccine manufactured by Novartis contains the
- Amy C.