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Healing Autism: No Finer a Cause on the
December 14, 2001
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Autism No Longer A Rare Condition
Report Of Medical Research Council Autism Review Now
Trial Pits Adoptive Parents Against State
Judge Upholds Decision To Keep Boy Without Vaccine Out
Pediatricians Acknowledging Parent Leadership of
Autism No Longer A Rare Condition
[By Emma Young.]
A massive and co-ordinated research effort to identify the
causes of autism is urgently needed, say the authors of a major UK Medical
Research Council review of autism research.
The review concludes that autism and related disorders are
far more common than previously thought - and that there is no firm evidence to
date linking any environmental trigger with the disease.
Autism and related disorders affect six in every 1000
children aged under eight, the team found. The previous figure accepted by the
MRC was between one and two per 1000. The increase is bound to altered ideas
about what constitutes an autism spectrum disorder, as well as increased awareness
of the condition, the group says.
Their review of previous research revealed no evidence of
a link between the controversial MMR vaccine and autism. The group also found
no firm evidence linking immunological or bowel problems with the disorder - links
that have been suggested by some researchers.
There have been some recent very high quality
epidemiological studies in the UK, but individually, these studies are quite
small. We need future research that is interdisciplinary and has the strength
of being population-based, so were not studying biased samples of children,
says Carol Dezateux, a consultant paediatrician at the Great Ormond Street Hospital
in London, and a member of the review group.
Nature vs nurture
Judith Barnard of the UKs National Autistic Society, who
took part in the review, says: Were very pleased with this report, which has
been long overdue. Its an area that has been woefully under-researched in the
UK in the past. Most importantly for me, the report formally recognises that autism
can no longer be considered to be a rare condition.
The group says it is increasingly clear that there is a
genetic component to autism. But long-term prospective studies of large numbers
of children, including genetic, as well as detailed health and lifestyle data, will
be needed to help tease apart the genetic and environmental components of the
disorder, says Dezateux.
Much more basic biological work, to investigate
differences between autistic and healthy brains, for example, is also
necessary, she says.
How that research will be co-ordinated is another matter.
The MRC can boost robust inter-disciplinary autism research proposals by
targeting funds at these projects, Dezateux says.
But, says Barnard: Two years ago, the MRC issued a report
on autism and bowel disorders and called for specific research. Nothing on that
list has yet been done, because they are waiting for robust proposals.
We are asking the Department of Health for a dedicated
funding stream for autism research, she says, and raising the issue of a need
for a pro-active body to implement the findings of these review.
The review is published on the MRCs website:
* * *
Report Of Medical Research Council Autism Review Now Published
[Here is the
MRC announcement. Thanks to
The Medical Research Council published the report of its
detailed review of the current state of knowledge about autism.
The report, commissioned by the Department of Health in
March, provides a picture of what scientific research has revealed about the occurrence
and causes of autism and other autism spectrum disorders (ASDs), identifies
gaps in knowledge, and makes recommendations on future research strategy for
From the outset, the wide-ranging and inclusive review
incorporated questions and views from lay people including people with autism,
parents and representatives of autism charities and consumer groups.
The reports conclusions include:
Understanding of autism spectrum disorders (ASDs) has
greatly improved in the last few years and a substantial amount is now known
about developmental psychology and genetics
Around six in 1,000 young children have an autism
spectrum disorder. This estimate makes autism spectrum disorders far more
common than was previously generally recognised. Most of the apparent increase
is likely to have resulted from changed ideas about what an autism spectrum
disorder is, as well as increased awareness of the condition
It seems most likely that autism spectrum disorders
result from a range of causes but the strongest evidence to date is for a major
genetic component. It seems likely that several genes interact to create susceptibility
to the disorder. The interplay between genetic and environmental factors is
also likely to play a key role but the nature of these interactions is not yet
A number of theories about environmental risk factors
such as diet, drugs, toxins and infections have been proposed. These require
more high-quality research to be scientifically substantiated
In relation to the combined measles, mumps and rubella
(MMR) vaccine, current evidence does not support the proposed link of MMR to
This is consistent with the findings of previous expert
The report recommends:
Extending the researcher/consumer partnership beyond biomedicine
and research, so as to ensure that the best evidence is easily available to all
and to facilitate the growth of consumer involvement in research as a means to
enhance its quality and relevan
Building on the existing strengths of UK autism
research by improving co-ordination between research disciplines; seeking multi-disciplinary
strategies using models from and drawing on work in countries outside the UK;
and strengthening research training in service settings
More research on the definition of autism spectrum
disorders, especially in adults. This is crucial for both future research and
provision of services for those with ASDs
More basic biological research studies. There is still
a good deal of uncertainty about the biological processes involved in autism,
both in the brain and other organs
The use of large population studies, which include
genetic data, to address questions about environmental risks and their
interaction with genetic factors
More research to understand the significance of bowel
disorders in children with ASDs and how these symptoms can be managed
Further work on understanding the psychological
differences between people with ASDs and others, to help design effective
More research on the long-term effects of ASDs and
other medical conditions associated with these disorders
The full report and an executive summary are published on
the MRC web site at www.mrc.ac.uk.
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* * *
Trial Pits Adoptive Parents Against State
[By Carolynn McLuskey.]
Missoula resident Mike Maxwell knew something was wrong
with his adoptive son when the 3-year-old began banging his head repeatedly on
the carpeted floor of the Maxwell familys home.
Little did Maxwell and his wife, Kristin, know, that first
articulation of concern about their sons behavior to the family pediatrician
would mark the start of a journey that would ultimately lead them to a Helena
We hoped that there would be a magic bullet that (the
pediatrician) could prescribe a pill for us and it would all go away, Mr.
Maxwell testified in front of jurors Tuesday in the first day of the couples
civil battle against the State of Montana and the Montana Developmental Center (MDC).
It wasnt to be.
The Maxwells filed a lawsuit in Helena District Court
in February 2000
demanding that the state pay for the past and future care of
their son relating to his severe developmental disabilities. The child now
12 years old has been diagnosed with disabilities including autistic spectrum
disorder and schizophrenia.
The child was the offspring of a 42-year-old resident of
MDC who was raped in 1988 by Lloyd Dean Drummond, one of her caregivers at the
state-run facility. The rape victim was described as being mentally and
physically handicapped, unable to communicate or care for herself.
In 1989, the woman gave birth to the child, who was later
adopted by the Maxwells through Catholic Charities on the assurances that the
boy did not share the same mental conditions that affected his mother, the
Drummond was sentenced in October 1989 by former Boulder
District Court Judge Frank Davis to 20 years in Montana State Prison for the
rape of the MDC patient.
In 1991, the mother of the rape victim sued the state for
damages and was awarded $1.7 million by a Butte jury.
The state appealed that outcome to the Montana Supreme
Court, which ultimately overturned the verdict and sent the case back to
district court for a retrial.
A settlement was reached between the state and the
victims mother before the retrial could take place.
According to a pretrial order filed in the Maxwell case,
the state acknowledges that its negligence was the cause of the rape and
pregnancy of the MDC resident as a result of the hiring of Drummond.
In his opening arguments in the case, the Maxwells
attorney, Monte Beck, encouraged the state to extend that acceptance of
responsibility and help the Maxwells finance the heavy burden of caring for
their son, past, present and future.
Beck said he intends to demonstrate throughout the trial
that it is logical to believe that a severely disabled mother might pass on
some of her disabilities to her child a condition that is directly related to
the states negligence in allowing a rogue employee to be in a position to rape
an MDC resident.
The Maxwells seek to maximize (their sons) potential as
a human being, he said of the Maxwells efforts to obtain financial assistance
from the state by means of the civil case.
According to Beck, a professional life care planner hired
by the Maxwells indicates that the boy will have ongoing expenses related to medical
and psychological care, in addition to the financial burden of paying for
assisted living care once the boy leaves home.
The consultant estimates the costs of those services at
between $4.5 million and $10 million over the boys lifetime, Beck said.
Steve Harman, attorney for the state, indicated that the
state took responsibility for its actions in respect to Drummond by immediately
prosecuting him to the full extent of the law.
In addition, he said the state has paid for services for
the boy such as counseling and a classroom aide services supplied to all developmentally
disabled children working their way through the public education system.
Harman encouraged jurors not to sell the boy short.
He said the youth plays cello in the school orchestra,
average in language and reading and is described by his
teachers as having a sunny disposition.
Past costs related to the care of the boy are clear
about $14,000, mainly for the diagnosis of his maladies, Harman said.
However, no one knows what the future holds for the
As we look into his future, lets keep in mind that
(the boy) is a
work in progress, Harman said.
The trial is expected to last about a week.
* * *
Judge Upholds Decision To Keep Boy Without Vaccine Out Of School
[By Associated Press, Dec. 13, 2001.]
Morristown, N.J. (AP) A Superior Court judge has upheld a
school districts decision to keep a sixth-grader out of class because he hasnt
been vaccinated for Hepatitis B. Superior Court Judge Kenneth MacKenzie dismissed
a petition by 11-year-old Zachary Shaftans parents to reinstate their son to
Sparta Middle School. The decision was dated Thursday.
The boy was suspended Nov. 2 after he did not receive the
first in a series of three inoculations. His parents, Richard and Donna
Shaftan, believe the vaccination rule violates their sons rights and is
unnecessary, unrelated to education and invasive. The Shaftans said they plan
to appeal MacKenzies decision. The regulation, which took effect in September,
requires vaccinations for all children who were born in or after 1990 and are
entering sixth grade.
The Hepatitis B virus is transmitted through blood
products, bodily fluids and needle pricks, and can lead to chronic liver
disease, cirrhosis and liver cancer.
* * *
Pediatricians Acknowledging Parent Leadership of Medical Reform
[Thanks to Nancy D. Wiseman.]
In this months Archives of Pediatrics and Adolescent
Medicine is an editorial Child Development in Pediatrics: Beyond Rhetoric by Barry Zuckerman, MD;
Marilyn Augustyn, MD; and Steven Parker, MD. In part, they are alerting their
colleagues to a pediatric care reform movement being lead by parents and
acknowledging a large prevalence rate for autism. Mentioned by name is First Signs of New Jersey who is promoting
early detection and treatment awareness for that state.
Below is an excerpt.
. . .A parent group for children with autism has started a
national organization called First Signs to call for regular systemic screening
by pediatricians with validated instruments, emphasizing the social and emotional
aspects of development, to identify autism spectrum disorder. Among its many initiatives is a statewide
pediatric effort in New Jersey.
Systematic screening by pediatricians has also been
recommended by the American Academy of Neurology (St Paul, Minn) and other
professional organizations in response to research showing an approximately
10-fold increase in the prevalence of autism spectrum disorder.8 Because parent
groups have a long and special tradition of improving care for children, it is
likely that they, rather than professional organizations, will be more effective
in changing practice.
Full article available at:
* * *
I am looking for summer camps for autistic or ADHD kids in
We are looking for anyone interested in working with our 8
yr old son with
ABA and/or SI background.
We live in Carroll County, MD.
Auditory Integration Training Session in San Diego, December
three (3) openings remain, still time to register and receive
We just move to Henry County, GA. Looking for a ABA
therapist for 4 year old
functioning, loving and very sweet. Also we would love any help
from parents that have fought the Henry County school system
and won. We
Looking for ABA therapists in the Detroit, MI metro area to
work with my 4
year old son, 6-15 hours/week, weekends available. Will train. Requirements
are love for children, dependability, patience, and ability
Looking for additional tutors for our ABA program for two
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Kay Stammers Edward Decelie
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