FEAT DAILY NEWSLETTER      Sacramento, California      http://www.feat.org

December 14, 2001         News Morgue Search  www.feat.org/search/news.asp

PUBLIC HEALTH

·        Autism “No Longer A Rare Condition”

·        Report Of Medical Research Council Autism Review Now Published

EDUCATION

·        Trial Pits Adoptive Parents Against State

·        Judge Upholds Decision To Keep Boy Without Vaccine Out Of School

TREATMENT/CARE

·        Pediatricians Acknowledging Parent Leadership of Medical Reform

Autism “No Longer A Rare Condition”

[By Emma Young.]

http://www.newscientist.com/news/news.jsp?id=ns99991687

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 we’re 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 UK’s National Autistic Society, who took part in the review, says: “We’re very pleased with this report, which has been long overdue. It’s 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.

Dedicated funding

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 MRC’s website:

http://www.mrc.ac.uk/PDFs/autism_report.pdf

* * *

Report Of Medical Research Council Autism Review Now Published

[Here is the  MRC announcement.  Thanks to Peter Zwack.]

http://www.mrc.ac.uk/

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 the UK.

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 report’s 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 known

·        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 ASDs.

This is consistent with the findings of previous expert groups

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 services

·        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.]

http://www.montanaforum.com/rednews/2001/12/12/build/accountability/adopted.

php?nnn=3

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 family’s home.

Little did Maxwell and his wife, Kristin, know, that first articulation of concern about their son’s behavior to the family pediatrician would mark the start of a journey that would ultimately lead them to a Helena District courtroom.

“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 couple’s civil battle against the State of Montana and the Montana Developmental Center (MDC).

It wasn’t 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 Maxwells claim.

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 victim’s 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 state’s negligence in allowing a “rogue employee” to be in a position to rape an MDC resident.

“The Maxwells seek to maximize (their son’s) 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 boy’s 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, ranks above

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 child.

“As we look into his future, let’s 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.]

http://www.boston.com/dailynews/347/region/Judge_upholds_decision_to_keep:.s

html

Morristown, N.J. (AP) A Superior Court judge has upheld a school district’s decision to keep a sixth-grader out of class because he hasn’t been vaccinated for Hepatitis B. Superior Court Judge Kenneth MacKenzie dismissed a petition by 11-year-old Zachary Shaftan’s 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 son’s rights and is unnecessary, unrelated to education and invasive. The Shaftans said they plan to appeal MacKenzie’s 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.]

http://archpedi.ama-assn.org/issues/v155n12/ffull/ped10016.html

In this month’s 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:

http://archpedi.ama-assn.org/issues/v155n12/ffull/ped10016.html

* * *

Reader’s Posts

I am looking for summer camps for autistic or ADHD kids in the Arkansas,

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 22-31, 2001,

three (3) openings remain, still time to register and receive the benefits

We just move to Henry County, GA. Looking for a ABA therapist for 4 year old

son.  High 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 to follow

Looking for additional tutors for our ABA program for two young autistic

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