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SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Monday, March 01, 2004 Vol. 8 No. 43

THE AUTISM CALENDAR: NOW WITH OVER 300 EVENTS LISTED

http://www.SARnet.org/~events

No Registration, No Log-Ins, No Password, No Search Forms, No Cost

 

RESEARCH

* One of Largest Ever Genetic Studies of Autism Launched (Abstracts - contains technical language.)

* A Murine Model for Neuropsychiatric Disorders Associated with Group A beta-Hemolytic Streptococcal Infection

* Chromosome 2 Deletion Encompassing The MAP2 Gene In A Patient With Autism And Rett-Like Features

* Social Withdrawal, Neophobia, And Stereotyped Behavior In Developing Rats Exposed To Neonatal Asphyxia

PUBLIC HEALTH

* MMR Scientist Did Not Hide Link With Legal Case, Letter Reveals

* Doctor Demands Apology For MMR Claims in Lancet

* MMR Docs' Links With Drugs Firms

ADVOCACY

* Parents Gather At WI State Capitol To Protest Autism-Treatment Cuts

COMMENTARY

* Autism Is A Mystery, Not A Medical Conspiracy

CARE

* Worried Parents Want Police To Establish Registry

AWARENESS

* Parents: Autism Curable

LETTERS

* Twisted Conflicts

 

 

RESEARCH

One of Largest Ever Genetic Studies of Autism Launched

http://www.awares.org/pkgs/news/news.asp?showItemID=387&board=&bbcode=&profi

leCode=&section=

The Translational Genomics Research Institute (TGen), in collaboration with the Southwest Autism Research and Resource Center, has launched one of the largest and most comprehensive molecular and genetic studies ever conducted on children with autism.

TGen's president, Dr Jeffrey Trent, served as the scientific director of the National Human Genome Research Institute, which mapped the 3 billion-letter blueprint of life. Approximately 50,000 genes reside within this blueprint, and the complex interplay between all of those genes is what allows us to grow, develop and function.

TGen and SARRC's collaborative approach to understanding and treating autism is multi-faceted and takes advantage of the latest genome-scale technology.

While many human diseases are caused by a single defective gene, autism is a complex genetic disorder, meaning that a series of genes, which are slightly aberrant, come together and cause autism or a predisposition for an individual to contract the disorder.

Our goal is to advance discoveries toward finding a cure for this insidious neurobiological disorder and provide effective approaches to diagnoses and therapies within the next five years," said Dr Trent.

"Our study is possible today only because of the mapping of the human genome, which was achieved just two years ago this month. By identifying the biomarkers associated with autism, we hope someday soon to provide for early diagnosis and detection, and be able to suggest possible dietary and exposure modifications."

The study may ultimately involve samples and data from as many as 1,000 children with autism and 1,000 "typical" children who serve as control subjects.

TGen scientists and SARRC researchers will essentially be sifting through almost every molecule of a group of children with autism and comparing findings with data from children without the disorder.

"Technology exists today that allows us to obtain a simultaneous readout of how all 50,000 genes are turned on and off within an autistic individual's genome," said Dr Trent. "Additionally, all of the billions of data points that are generated in our studies will be made publicly available on TGen's Web servers so scientists worldwide can assist in interpreting the results. The elegance of this approach is that we can use the expertise of the world's collection of scientists to assist in curing autism and other disorders."

TGen's neurogenomics laboratory is the hub of a national consortium of genome centres that provide state-of-the-art technology to roughly 3,000 investigators who are all studying diseases of the brain.

"At TGen, our expertise and technology, combined with a passionate sense of urgency for understanding disorders such as autism, have culminated in one of the most powerful discovery engines in the world," said Dr Trent. "To provide therapeutic options to children with autism and other disorders once we understand the genetic underpinnings, we have solidified relationships with many of the largest pharmaceutical companies to provide us with state-of-the-art smart drugs, which will be effective against the disease process we identify.

"This initiative with SARRC represents a model for collaboration as TGen's genomics expertise, latest genome-scale tools and sophisticated computer hardware, bioinfomatics and resources complement SARRC's extensive knowledge of autism and the organisation's many strengths in the areas of clinical research, subject recruitment and enrollment and community-based support.

"Our hope is that the by-product of these two non-profit organisations will soon: yield a highly regarded visible research study that is doing something incredibly important for children and families; elevate Arizona's position as a site for large-scale research studies and clinical trials; attract out-of-state research funding from government grants, private industry and foundations and discover the genetic underpinnings of autism, which ultimately will lead to a cure."

Dr Trent added: "It is difficult to predict when we will have a cure for autism, but the next five years will shed light on the underlying biological processes that give rise to this tragic, complex disorder."

More than 10 families contact the Phoenix-based South-west Autism Research and Resource Center every week after hearing their child's diagnosis of autism.

As well as the promising research under way in Arizona through SARRC's collaboration with the Translational Genomics Research Institute, there is also is an innovative community resource being developed in Phoenix that soon will serve as a model for other research- and resource-based organisations across the United States.

This model is called the Campus for Exceptional Children, and it is being developed by SARRC together with families, generous community leaders, compassionate businesses and countless other organisations committed to caring for children.

The 18,000-square-foot facility will help SARRC to accelerate its research into the causes of autism and the most promising intervention therapies; effectively to respond to the needs of affected families; and facilitate systemic changes in our community, from health care and service delivery systems to classroom instruction, vocational skill development and long-term care.

Late last year, officials from the National Institutes of Health convened the first-ever National Autism Summit in Washington, DC, to outline a long-term inter-agency plan to deal with the increased diagnoses of autism.

SARRC's strategic plan falls into line with many of the challenging goals set forth at the summit, including developing teaching methods which will enable the majority of children with autism to speak; identifying genetic and non-genetic causes of the disorder; and providing adequate services and resources to all afflicted children and their families.

(Source: Arizona Republic, February 29, 2004)

 

 

 

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* * *

A Murine Model for Neuropsychiatric Disorders Associated with Group A beta-Hemolytic Streptococcal Infection Neurobiology of Disease

[Full text of paper available at this link.] http://www.jneurosci.org/cgi/content/full/24/7/1780

1: J Neurosci. 2004 Feb 18;24(7):1780-91.

Kurt L. Hoffman, Mady Hornig, Kavitha Yaddanapudi, Omar Jabado, and W. Ian Lipkin Greene Infectious Disease Laboratory, Mailman School of Public Health, Columbia University, New York, New York 10032

A syndrome of motoric and neuropsychiatric symptoms comprising various elements, including chorea, hyperactivity, tics, emotional lability, and obsessive-compulsive symptoms, can occur in association with group

-hemolytic streptococcal (GABHS) infection.

We tested the hypothesis that an immune response toGABHScan result in behavioral abnormalities. Female SJL/J mice were immunized and boosted with a GABHS homogenate in Freund’s adjuvant, whereas controls received Freund’s adjuvant alone.

When sera from GABHSimmunized mice were tested for immunoreactivity to mouse brain, a subset was found to be immunoreactive to several brain regions, including deep cerebellar nuclei (DCN), globus pallidus, and thalamus. GABHS-immunized mice having serum immunoreactivity toDCN also had increased IgG deposits in DCN and exhibited increased rearing behavior in open-field and hole-board tests compared with controls and with GABHS-immunized mice lacking serum anti-DCN antibodies. Rearing and ambulatory behavior were correlated with IgG deposits in the DCN and with serum immunoreactivity to GABHS proteins in Western blot.

In addition, serum from a GABHS mouse reacted with normal mouse cerebellum in nondenaturing Western blots and immunoprecipitated C4 complement protein and -2- macroglobulin.

These results are consistent with the hypothesis that immune response to GABHS can result in motoric and behavioral disturbances and suggest that anti-GABHS antibodies cross-reactive with brain components may play a role in their pathophysiology.

PMID: 14973249 [PubMed - in process]

* * *

 

Chromosome 2 Deletion Encompassing The MAP2 Gene In A Patient With Autism And Rett-Like Features.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=14986829&dopt=Abstract

Pescucci C, Meloni I, Bruttini M, Ariani F, Longo I, Mari F, Canitano R, Hayek G, Zappella M, Renieri A. Medical Genetics, Department of Molecular Biology, University of Siena, Siena, Italy.

We present here a unique case of a 14-year-old female with autism and some features similar to Rett syndrome (RTT). Genetic analysis demonstrated a large deletion of chromosome 2q instead of a MECP2 mutation. Like a Rett patient, she is dyspraxic and shows frequent hand-washing stereotypic activities, hyperpnea, and bruxism. Like a preserved speech variant (PSV) of RTT, she is obese, able to speak in second and third persons, frequently echolalic, and has final normal head circumference and autistic behavior.

In addition, she has dysmorphic features such as down-slanting palpebral fissures, low set ears without lobuli, bilateral flat feet, and bilateral syndactyly of the second and third toes, which do not belong to the Rett spectrum. She has a de novo chromosomal deletion in 2q34 of paternal origin.

Gene content analysis of the deleted region showed the presence of 47 genes (14 putative and 33 known genes). This region contains some interesting genes such as ADAM23/MDC3, CREB1, KLF7, and MAP2. Because alteration of neuronal maturation, dendritic anomalies, and a decrease in MAP2 immunoreactivity in white matter neurons are well documented in RTT patients, we propose MAP2 gene as a good candidate for the generation of PSV phenotype in this case.

PMID: 14986829 [PubMed - in process]

* * *

 

Social Withdrawal, Neophobia, And Stereotyped Behavior In Developing Rats Exposed To Neonatal Asphyxia

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=14985924&dopt=Abstract

 

Laviola G, Adriani W, Rea M, Aloe L, Alleva E.

Section of Behavioral Pathophysiology, Lab Fisiopatologia OS, Dipartimento Biologia Cellulare e Neuroscienze, Istituto Superiore di Sanita', viale Regina Elena 299, 00161, Roma, Italy.

Perinatal asphyxia is a concern for public health and may promote subtle neuropsychiatric disorders. Anoxic insults to neonatal rats cause long-lasting neurobehavioral deficits. In the present study, we focussed on changes in emotional behaviors as a consequence of neonatal asphyxia in Wistar rats. Newborn pups (24 h after birth) underwent a single 30-min exposure to a 100% N(2) atmosphere (or air).

The offspring was tested for a) locomotor and exploratory activity with or without a d-amphetamine challenge (0, 1, or 2 mg/kg) on postnatal day (pnd) 15; b) social interactions and novelty seeking during adolescence;

c) levels of the brain-derived neurotrophic factor (BDNF).

In the open-field test (pnd 15), N(2)-exposed pups injected with the high (2 mg/kg) amphetamine dose exhibited reduced levels of locomotor hyperactivity, and a more marked involvement in stereotyped behaviors. Individual differences emerged in the locomotor response to the novelty-seeking test: two subgroups of rats (separated on the basis of the median value) showed either arousal/attraction or avoidance/inhibition in response to free-choice novelty.

The N(2)-exposed group showed a more marked novelty-induced avoidance and inhibition. Time devoted to allogrooming and play-soliciting behaviors was reduced, whereas object exploration was increased. Levels of BDNF were reduced in the striatum of N(2)-exposed rats, suggesting poorer synaptic performance of dopamine pathways.

In conclusion, these findings suggest an increased risk of developing social withdrawal, neophobia and behavioral stereotypies (common symptoms found in schizophrenia and autism) as a consequence of neonatal asphyxia in preterm humans.

PMID: 14985924 [PubMed - as supplied by publisher]

* * *

PUBLIC HEALTH

MMR Scientist Did Not Hide Link With Legal Case, Letter Reveals

[By Jeremy Laurance, Health Editor.] http://news.independent.co.uk/uk/health/story.jsp?story=495522

Andrew Wakefield, the researcher who sparked the MMR scare with a paper in The Lancet six years ago, did not cover up his links with the Legal Aid Board, it emerged yesterday.

Dr Wakefield was accused at the weekend of failing to disclose the conflict of interest over his research at the Royal Free Hospital in London, suggesting a possible link between the MMR vaccination and bowel disease and autism, which has led tens of thousands of parents to boycott the triple vaccination.

But he did reveal his links with the Legal Aid Board in a letter published in The Lancet on 2 May 1998, less than three months after his original research paper.

Responding to critics of his study who suggested it was suffering from "litigation bias", he admitted that he had been asked to "evaluate a small number of children by the Legal Aid Board". But he insisted that the children had been referred to him through normal channels and there had been no bias in the way they were selected.

The disclosure raises questions about why The Lancet did not repudiate the study at the time on the grounds that Dr Wakefield's involvement with the Legal Aid Board represented a conflict of interest. It only did so when the same allegations were put to it last week by The Sunday Times, almost six years later.

A four-month investigation by the newspaper revealed that Dr Wakefield had received £55,000 from the Legal Aid Board while working on the Lancet study in preparation for a possible claim against the vaccine manufacturers. At least four of the 12 children in the Lancet study were also included in the study for the Legal Aid Board. The money was paid into his research fund.

Richard Horton, editor of The Lancet, said at the weekend that Dr Wakefield's failure to disclose the conflict of interest left his research paper "fatally flawed". But the letter published in The Lancet in May 1998 made Dr Wakefield's links with the Legal Aid Board clear. In the letter, responding to critics of his paper published three months earlier, he wrote: "Only one author (AJW) has agreed to help evaluate a small number of these children on behalf of the Legal Aid Board." AJW are Dr Wakefield's initials.

The Lancet declined to comment on the letter yesterday but a spokesman for a medical publisher suggested it did not amount to a full disclosure because it came three months after publication of the paper, made an indirect reference to the legal aid study and did not mention any payment.

* * *

Doctor Demands Apology For MMR Claims in Lancet

[By Julie Henry.] http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2004/02/29/nmmr29.xml&s

Sheet=/news/2004/02/29/ixhome.html

Andrew Wakefield, the doctor who first raised fears of a link between autism and the MMR vaccine, has hired a libel lawyer to demand an apology from The Lancet after claiming that the medical journal has cast doubt on his honesty.

Dr Wakefield's decision to enlist the support of Carter-Ruck, the London law firm that specialises in defamation suits, follows the denunciation of his work last week by The Lancet.

Dr Richard Horton, the editor of The Lancet, who published Dr Wakefield's findings in February 1998, said that he would not have printed the research if he had known that Dr Wakefield was being paid £55,000 as part of a legal action against the MMR vaccine's manufacturers. Dr Horton said that as a result of this "conflict of interest", Dr Wakefield's research was "fatally flawed".

In a letter sent on Friday to Dr Horton, Dr Wakefield's lawyers have, however, rejected the claims against him and demanded a full apology. It

said: "Our client entirely rejects your assertion that his work for the Legal Aid Board gave rise to a conflict of interest in relation to the paper published in The Lancet.

* * *

MMR Docs' Links With Drugs Firms

[By Fionnuala Burke, Sunday Mercury, UK.] http://icbirmingham.icnetwork.co.uk/0100news/0100localnews/content_objectid=

14001726_method=full_siteid=50002_headline=-MMR-docs--links-with-drugs-firms

-name_page.html <- - address ends here.

Four leading Midland doctors who deemed the controversial MMR vaccine safe have links to the drug giants who make or supply the jab.

Campaigners have called for the General Medical Council to investigate the senior Government advisors, who all hold scientific posts in the Midlands and sat on key committees which declared the vaccine safe.

Professor James Chipman from Birmingham University, a member of the Committee on Safety of Medicines, received research funding from GlaxoSmithKline, suppliers of the MMR vaccine Priorix.

Consultant cardiologist Dr Colin Forfar from John Radcliffe Hospital in Oxford, a shareholder in GlaxoSmithKline, is also a member of the influential committee.

Professor Terence Stephenson, from the Queen’s Medical Centre in Nottingham, sits on the same committee but his travel expenses are paid by the same drugs giant.

Professor Michael Langman from Birmingham University is the Chairman of the Joint Committee on Vaccination and Immunisation.

His team received research support from Merck Sharp and Dohme, which manufactures MMR vaccine.

Now Jonathan Harris, West Midlands campaigner for vaccination awareness group JABS (Justice Awareness and Basic Support) is calling for the GMC to investigate the work of the medics.

Only two of Mr Harris’s six children had the MMR vaccine and both of them are autistic.

"A total of 19 Government experts are connected to the drugs industries that deal with the MMR vaccines," he said. "Shouldn’t this be considered a conflict of interests? "These experts are advising the Government about the safety of the MMR vaccine at the same time as receiving payments or holding shares in the companies selling the jab.

"The Government requested that the GMC investigate the work of Dr Andrew Wakefield, who first proposed the link between MMR and autism.

"They declared it was ‘a matter of urgency’ when it emerged that he had received funding from lawyers representing parents of children who felt they had been damaged by the vaccine.

"So why shouldn’t they investigate these doctors who have links to the drugs industry while they are at it?"

The doctors’ watchdog GMC agreed to consider a full investigation into the work of Dr Wakefield last week at the request of the Health Minister John Reid.

The medical researcher provoked a furore when he first proposed a link between MMR and autism in a paper published in The Lancet magazine in 1998. In a press conference later he also recommended parents opt for single jabs.

The editor of The Lancet has since said that he would not have printed the study if he had known Dr Wakefield had received funding for it from the Legal Aid Board. It emerged that Dr Wakefield received £55,000 from the Board to investigate claims by parents that their children had been damaged by the measles, mumps and rubella jab.

And the GMC has agreed to consider a full inquiry into the study following a request from the Secretary of Health John Reid stating that it "was a matter of urgency".

A spokesman for the GMC confirmed that the four Midland medics were registered with them but declined to say whether it would consider opening an investigation into their work and links with the drugs firms.

None of the doctors were available for comment last night. Their personal and non-personal interests have all been openly declared to the independent advisory committees on which they sit.

 

 

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* * *

ADVOCACY

Parents Gather At State Capitol To Protest Autism-Treatment Cuts Echoes of California

[By John Dipko for the Press-Gazette, Madison, Wisconsin.] http://www.greenbaypressgazette.com/news/archive/local_14924592.shtml

Scores of parents whose children have autism gathered at the State Capitol Thursday to send state officials a message about their loved ones’

care: Treat now or else pay later.

The Families for Effective Autism Treatment rally was designed to raise awareness that intensive in-home treatment isn’t nearly what it was since the state implemented changes as part of the 2003-’05 state budget.

Bellevue mom Candee Eckberg said the changes mean about 10 fewer hours of therapy a week and even fewer in about eight months for her son, Joshua, 4.

Eckberg said the one-on-one therapy has helped Joshua greatly over the past two years, but she fears the changes will curb his progress.

"He’s come so far, but his help will be gone," said Eckberg, who had Joshua’s picture and placards that read "No child left behind" and "treat now or pay later."

Eckberg joined the dozens of Wisconsin parents wearing yellow T-shirts and toting their children or pictures of them as they gathered to hear speeches from rally organizers and autism experts.

Their voices apparently have been heard: Gov. Jim Doyle said he would convene a task force to seek solutions to the problem.

"The governor has been meeting with parents and providers, and he wants to address the issues that have been brought to his attention and work with parents and providers who’ve been active on this issue," Doyle spokesman Dan Leistikow said. "He is in the process of forming a task force to address some of the issues they’ve raised."

Facing the loss of federal money as well as a $3.2 billion state deficit, Doyle last year proposed ending the $30 million-a-year program, which covered about 1,000 children a year with as much as 35 hours a week of in-home autism therapy. He reconsidered following an outcry by parents that the program helped their children.

The state restored some of the funding but had to make changes in order to cover costs.

Many parents said that not only are their children now receiving less therapy, but much of the reduced funding is tied up in administrative expenses and not being used for direct services.

Ken and Janice Becker of Bellevue said their son, Justin, 13, went from 30 to 35 hours a week of therapy to seven. He actually only receives therapy about four or five hours a week because of the administrative fees, they said.

* * *

COMMENTARY

Autism Is A Mystery, Not A Medical Conspiracy

[By Gerald DeGroot.] http://news.scotsman.com/columnists.cfm?id=237982004

The knives are out for Andrew Wakefield, the doctor who linked autism to the MMR vaccine. Over the last few weeks, various reports have indicated serious flaws in his research. News has also emerged that he received (but did not disclose) £55,000 from a legal aid project set up to look for links between the vaccine and the disorder. Richard Horton, editor of The Lancet, admitted that his journal would not have published Wakefield’s paper in February 1998 had it known about his conflict of interest. Stated simply, for the last six years parents have been tortured by a myth.

With Wakefield discredited, the government now hopes that a line can be drawn under this sorry episode. But I suspect that we have not seen its end. Wakefield will emerge as a martyred hero, a brave and lonely warrior waging battle against the conspiratorial medical profession. The pain he has inflicted on parents of autistic children will continue.

In contrast to Wakefield, I intend to declare an interest at the outset. My son Josh is autistic. Like most children, he was given the MMR vaccine at around 18 months. Shortly afterwards, he began exhibiting the first signs of what we now identify as autistic behaviour. The link between these two events is tempting, but, for reasons of sanity, I have resisted it.

In the vast majority of cases, autism manifests itself at around two years, or, in other words, just after the MMR is administered. This coincidence inspired Wakefield’s study. In 1998, his team reviewed reports of children with bowel disease and autistic symptoms. Their research led them to conclude that the MMR shot caused developmental regression, in some cases within 24 hours of vaccination.

Needless to say, these ‘findings’ sent shock waves through the medical profession and, at a stroke, undermined the vaccination programme followed by most countries. Worried parents withdrew their children from the MMR regime. In this country, 91% of children received the vaccination before Wakefield’s report. Coverage now stands at 79%, leading to fears that epidemics of measles, mumps and rubella will result.

The flaws in Wakefield’s research are huge. His sample consisted of just 12 children, all of whom displayed autistic symptoms. In other words, there was no control group of healthy children for comparison. The way the children were selected also seems suspicious. In nine cases, the parents or paediatrician speculated that the MMR vaccine had contributed to behavioural problems. So they were already disposed to the idea of a connection. These children were referred to Wakefield, rather than being a random sample of autistic children. Furthermore, in four cases, the symptoms of autism pre-dated the administration of the vaccine.

As far as I’m concerned, these flaws are sufficient to reject Wakefield and to conclude that I did not endanger my son’s well-being by agreeing to the MMR. Some parents, however, feel that the slightest indication of a link is sufficient to decline the vaccination, even at the risk of exposure to measles, mumps or rubella, which have potentially more catastrophic consequences than autism.

To maintain suspicion requires not only ignoring the flaws in Wakefield’s research, but also turning a blind eye to the large number of studies which show no causal link. The conclusions of these studies are remarkably similar: all show that, during the period under investigation, the incidence of autism has increased dramatically, while the level of MMR vaccination has remained virtually constant. If there were a link, one would expect the shape of the MMR level of immunisation curve to be very similar to the autism case numbers, which it is not. In the most comprehensive research, all children born in Denmark between January 1991 and December 1998 were studied. Of 537,303 children, 440,655 received the MMR shot, while 96,648 did not. Researchers found no difference in the incidence of autism between the two groups.

Some parents are nevertheless inclined to trust Wakefield’s skewed sample of 12 rather than the conclusions drawn from studying hundreds of thousands of children around the world. The stubborn persistence of the MMR myth implies a belief that the medical profession is riddled with corruption and that doctors in many different countries have conspired in the forced administration of a vaccine which is dangerous. Organising a conspiracy of such proportion seems mind-boggling, especially since the precise purpose of doing so is unclear. As far as I can tell, doctors have nothing to gain from administering the MMR, other than the noble one of protecting the population from dreadful diseases.

The MMR myth is, I think, a symptom of our compensation culture. There was a time when we accepted that some ailments had neither cause nor cure. We labelled them ‘acts of God’. These mysterious diseases were part of life’ s lottery. But, over the last century, the advancement of medicine has meant that many medical conundrums have been solved. This advancement has, in one way, been to the detriment of the medical profession. People nowadays believe that all ailments should have explanation and cure. When they do not, the doctors are blamed, and compensation is sought.

+ Article continues:

http://news.scotsman.com/columnists.cfm?id=237982004

* * *

CARE

Worried Parents Want Police To Establish Registry

"Some autistic kids wander off or are drawn to water"

[By Michelle Ruby for the Espositor, Ontario. Available online for a fee at below address. Thanks to Dennis Debbaudt.] http://www.infomart.ca

Many parents live with constant fear for the safety of their autistic children.

Some youngsters with autism spectrum disorder seem to have a Houdini-like ability to escape even the most secure rooms, homes, and yards. Caregivers need only look away for a second for a child to slip out of view.

Sharon Allison was frantic when her four-year-old autistic son, Erik Vivian, walked out the door of their Ontario Street home last summer. Erik, who speaks very little, is unable to recite his name and address.

After a short search of the busy neighbourhood, Allison found her son, who had been picked up by a concerned woman who called the police.

"He had almost been hit by a car."

Erik may have been the first autistic child the officer who responded to that incident had met. But as the number of people being diagnosed with autism and its related disorders increases, more contact with police is inevitable.

In fact, Dennis Debbaudt, who has made educating police officers about autism his life's work, says people with the disorder and other developmental disabilities are estimated to have up to seven times more contact with law enforcement agencies during their lifetimes.

A private investigator based in Florida, Debbaudt has a 20-year-old son with autism. Although his son is reasononably independent, Debbaudt worries that some of his unusual mannerisms and speech patterns could be misinterpreted.

"Police could make errors in what they see and hear from him and think he's high or drunk. Parents are afraid their autistic kids will scare others or say or do something inappropriate."

Wandering, or elopement, is also common among those with autism spectrum disorders. They may run on to busy streets or into a neighbour's home or unlocked vehicle. Tragically, Debbaudt says, some of these so-called runners are often attracted to water, and without real fear of danger, they will jump into pools, ponds, and lakes without knowing how to swim.

Debbaudt said many police services are establishing registries for autistic people, similar to those used to identify wandering Alzheimer's sufferers. Those registries typically include the person's name, address, date of birth, emergency contact information, medical concerns and a photo.

Insp. John Bates of the Brantford police said the department has been using an Alzheimer's registry for many years to track wandering people who are "usually located in a short period of time."

Bates said city police have not been contacted about developing a similar registry for those with autism but said they are "always trying to further integrate themselves with the community."

Clifford Gowan, president of the Brantford chapter of Autism Society Ontario, also sees a registry as a possible life-saver for autistic people inside their own homes.

"I'd like to have a registry with police and the fire department so those people know what they're walking into in an emergency situation," said Gowan. "There should be information in a database so that when a call came in they would know that the second bedroom on the right belongs to the child with autism."

Executive director Margaret Spoelstra said Autism Society Ontario has looked at a variety of ways to identify autistic children who go missing. She said that although several police services have expressed interest, some methods involve confidentiality issues and can be costly to implement.

In the meantime, the autism society is doing what it can to help train police officers to recognize the signs of autism and offer advice about how to approach someone found wandering.

The group has purchased 300 copies of Debbaudt's autism awareness video for law enforcement and distributed it across the province.

Police chiefs form all over Ontario attended a presentation made by Debbaudt last summer and he plans to be in New Brunswick spreading his message later this year.

* * *

AWARENESS

Parents: Autism Curable

"The San Mateo-Foster City School District is up to its neck in autistic kids." -Dr. Jeff Bradstreet

[By Yunmi Choi of the Daily Journal. San Mateo is on the San Francisco peninsula in California.] http://www.smdailyjournal.org/article.cfm?issue=03-01-04&storyID=28561

These days, 8-year-old Sophie Horn is singing songs with a little more melody. It’s a nice change of tune for a child who was diagnosed with autism when she was 2.

For decades, it was commonly thought that autism was an incurable state. Now a growing legion of parents nationwide say their children are making complete recoveries and San Mateo resident Elizabeth Horn — Sophie’s mother — is documenting them in a new film.

It’s a topic loaded with controversy, with no definitive findings about why the number of autism cases has exploded in recent years. Between 1997 and 2002, the number of autism cases jumped 87 percent around the state — a trend that’s being echoed around the world. Doctors and special education officials can’t agree on the causes for the sudden spike, however, let alone whether it’s possible to "cure" an autistic child.

In fact, some say these recovered children may never have been autistic in the first place. Jim Cox, special education director in the San Mateo-Foster City School District, said many of these children have other disorders that led to "autistic-like conditions." Although children with autism can be taught, Cox said it is essentially an "existential state" — meaning that’s just the way kids are glued together from birth.

San Mateo [sic] doctor Jeff Bradstreet, who works closely with Horn, said autism is curable, however. The condition is linked to the growing amount of toxins children have been getting in recent years, he said, mainly through vaccines.

Bradstreet maintains a Web site called the "Good News Doctors Foundation." According to the Web site, the foundation is "a Christian ministry that provides hope and information on how to eat better, feel better, and minister more effectively as a result of a biblically-based, healthy lifestyle."

However, doctors at the Mind Institute, a leading research institution on autism, say there is little to no evidence linking autism to vaccines.

A holistic cure

Autistic children get an onslaught of intervention in the San Mateo-Foster City School District. Occupational, behavioral and speech and language therapy are just some of the ways the district intervenes to help children become functioning adults.

To truly recover, however, Horn said it’s critical to treat the child holistically — meaning parents should look at the biological and chemical conditions that might be playing into the condition.

"Is there yeast in the gut? A gastrointestinal problem?" she said.

For example, there’s a particular neural pathway that commonly shows aberrations in autistic children. When that pathway is treated with Vitamin B12, Horn said it can kick start a recovery. Since her daughter started getting the treatment three weeks ago, Horn said she’s seen significant improvements in Sophie’s attention, language and behavior.

Other completely nonverbal children start talking in full sentences the day after getting the treatment, she said. That’s just one of the treatments that can lead to recovery.

"Every kid is different," she said. "There’s nothing definitive out there, so parents have to be really motivated to find a cure — they have to be self starters."

Horn is encouraging doctors nationwide to create a database of children who have recovered from autism. Once recovered, Horn said the parents often don’t want anyone to know their children were autistic.

"There’s this whole underground of parents out there who are just starting to come out with their stories," Horn said.

Vaccines

Many parents swear their children were fine before receiving vaccines.

"Thousands of parents will show you videotapes of normal kids. Then they get the MMR shot and they’re gone," Horn said. "When you have number of kids who get very ill after getting a shot, it’s difficult to say the shot had nothing to do with it."

Parents often assume vaccines are causing autism because the shots are typically given when children first start showing signs of the condition, said Cox.

"No, it’s not good to give mercury to kids, but that doesn’t necessarily suggest causation," he said. "There’s little accepted evidence to show it."

Cox said autism is a neurological condition that comes about when the neural tube is being formed between the 17th and 25th days of gestation. That’s when the fetus is most sensitive to alcohol, cocaine and other substances that cause neural tube defects, he said.

Sally J. Rogers, a senior scientist at the Mind Institute, said there is no evidence of a link between vaccines and autism.

"There have been a number of studies on the issue, but nothing showing there’s an empirical linkage. There’s just no evidence that vaccines have a role," Rogers said.

That doesn’t mean vaccines can’t trigger an autistic condition for some children, however, she said. Primarily, she said autism is the result of an interplay of genes. Scientists are now researching how environmental conditions could affect existing genetic conditions to spike the number of autism cases, she said.

Although there’s no definitive understanding about the explosion of autism cases, some theories are more popular than others.

One of the leading and most controversial ideas is that a mercury preservative in many vaccines, thimiserol, can have detrimental effects on children who have genetic conditions that make them susceptible to mercury. The U.S. government began phasing out the preservative a few years ago, but it remains in some vaccines.

It’s not a single shot that parents are blaming, however. When Horn was a child, she said she only got about eight vaccines. These days, she said kids are subjected to dozens.

"Over the past 20 years, the number of immunizations rose so dramatically," Horn said. "We never actually calculated how many micrograms of mercury kids are taking."

Whether the increased number of vaccines are to blame, one thing is clear in the foggy world of autism.

"The San Mateo-Foster City School District is up to its neck in autistic kids," Bradstreet said.

* * *

LETTERS

Twisted Conflicts

[To The Observer, UK.] http://observer.guardian.co.uk/letters/story/0,6903,1158682,00.html

It seems a scientist, such as Dr Andrew Wakefield (News and Leader, last week), who uncovers genuine concerns about the safety of a vaccine has to be 'squeaky clean'.

In contrast, scientists who are vocal in support of the vaccine, and are responsible for checking its safety, are allowed to receive research funding from the company that produces it and to hold shares in the company, or act as consultants.

These people will doubtless claim that they have declared a conflict of interest. However, the declaration of a conflict of interest does not mean that such a conflict does not exist. Which 'MMR scandal' is the Health Minister proposing to set up an enquiry to investigate?

- Dr Milton Wainwright Department of Molecular Biology and Biotechnology

University of Sheffield

 

The furore over Dr Andrew Wakefield's 1998 Lancet paper is a storm in a teacup. Your assertions that 'colossal damage has been done' are misleading hyperbole. There is no evidence that the decision of many parents to shun the MMR in favour of single vaccines is damaging.

Who has been damaged? Not the children. There were more than three times as many notified cases of measles in the five years preceding Wakefield's paper (1993-1997) as there were in the five years following it (1998-2002). More people died from measles in the period 1993-7 than in the subsequent five years. In fact no child under five (the age group the MMR is designed primarily to protect) has died from measles since 1992. Experts have been predicting measles epidemics for years.

'We could be on the verge of a public health disaster', proclaims your editorial. Yet the real health disaster is the epidemic of autism. The numbers of autistic children have risen 10-fold since the introduction of the MMR in 1988. Your leader is also incorrect to state that 'his fellow authors have disowned the paper'.

The only way to discover the true impact of the MMR vaccine on the incidence of autism in this country is to conduct a prospective study following children up for many years. If that had been instigated by the Department of Health when Dr Wakefield first shared his concerns in confidence with them in 1997 we would by now have the answer.

- Dr Richard Halvorsen Holborn Medical Centre, London

* * *

 

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