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SCHAFER AUTISM REPORT "Healing Autism:
No Finer a Cause on the Planet" ________________________________________________________________
Wednesday, March 03, 2004 Vol. 8 No. 45
PUBLIC HEALTH
* Childhood Vaccine-Autism Study Renounced
* Private Eye: MMR Interesting Conflicts PART I
* Genuine Concern or Corporate Greed? Interesting Conflicts Part II
AWARENESS
* Lifting the Veils of Autism, One by One by One
LETTERS
* About Siblings
* What's Wrong With this Format. . .
READERS' POSTS
PUBLIC HEALTH
Childhood Vaccine-Autism Study Renounced
[By Emma Ross for The Associated Press.] http://www.washingtonpost.com/wp-dyn/articles/A28292-2004Mar3.html
London - Most of the scientists involved in widely discredited 1998 study suggesting a link between childhood vaccinations and autism have renounced the conclusion. Ten of the study's 13 authors have signed a formal retraction, the text of which was released Wednesday by The Lancet ahead of its publication later this week in the British medical journal.
"The only thing renounced are opinions, not the
science. This is another hurried, empty publicity
stunt. . .they're getting desperate, and they're very
powerful." says autism campaigner
The retraction follows the recent revelation that the main author was being paid separately by lawyers for parents who claimed their children were harmed by the immunizations. Some of the children involved in the lawsuit were also involved in the study.
The study undermined public confidence in the triple vaccine for measles, mumps and rubella by suggesting it might be linked to autism. MMR vaccination rates fell dramatically in Britain and several other European nations and have yet to recover, although subsequent studies dismissed a connection between autism and the vaccine.
"We wish to make it clear that in this paper no causal link was established between (the) vaccine and autism, as the data were insufficient. However, the possibility of such a link was raised," the scientists said in the retraction.
"Consequent events have had major implications for public health. In view of this, we consider now is the appropriate time that we should together formally retract the interpretation placed on these findings in the paper," the group wrote.
The study, involving 12 children, was conducted about eight years after they had been vaccinated and was based in large part on parents remembering whether the autism symptoms occurred around the same time as the shots. The main author, Dr. Andrew Wakefield, who at the time was working at the Royal Free Hospital in London, is among those who have not signed the retraction. He could not be reached for comment.
However, he has continued to insist the study was valid, despite the findings of authoritative groups such as the World Health Organization and the U.S. Institute of Medicine.
The scientists signing the retraction work for institutions that include the Royal Free Hospital, the Institute of Child Health in Liverpool, England, and Cambridge University.
* * *
COMMENTARY
Private Eye: MMR Interesting Conflicts
http://www.private-eye.co.uk/ Not available online.
The vilification of Dr Andrew Wakefield in recent days has been a side show to the important issue of whether the mumps, measles, and rubella triple vaccine (MMR) poses a risk to a small sub set of children. But the attacks have served a purpose. They have highlighted the need to preserve independent medical research - and reminded the public that there is one rule for an off-message messenger like Dr Wakefield and quite another for the government and drug companies.
For example, one leading health official responsible for immunisation has been working as an expert for the three defendant drug companies in the UK MMR court case since July 2002. Yet as far as the Eye can ascertain, she has never declared that potential "conflict" on any of her research papers.
Dr Elizabeth Miller, head of immunisation at the government"s Health Protection Agency (HPA), last year alone published three papers in the Archives of Disease in Childhood directly related to the MMR controversy. One suggested that the combined triple live virus does not overload the immune system, so there is no need for single vaccines. Two others suggested that parents have been more likely to attribute their children's autism to MMR since 1998, when Dr Wakefield and his team at the Royal Free hospital in north London published their controversial paper.
Nowhere on Dr Miller's papers does she declare that she is also an expert witness for the drug companies GlaxoSmithKline, Aventis Pasteur and Merck.
Moreover, the Eye has begun trawling through scientific and medical journals to examine papers published over the last two years by other defendant drug company experts. So far we have not found a single declaration on any paper that the author also acts as an expert for the defendant drug companies - even though at least two of the experts (Dr Diane Griffin, an American, and Professor Volker ter Meulen, a German), have produced research papers directly associated with vaccination.
Unlike in the case of Dr Wakefield, there have been no screaming headlines attacking their credibility or honesty; no demands for an inquiry by the General Medical Council; no snipes at their "fatally flawed" research.
Instead, such authors continue to enjoy the support of government and big business. By contrast, Dr Wakefield only has the support of harrassed parents who believe their children were damaged by MMR, and, until recently, the impoverished Legal Services Commission - hardly powerful or influential.
Dr Miller maintains that neither she nor her department was paid by the three pharmaceutical companies for the detailed and lengthy report she submitted on their behalf to the court last June. She prepared their evidence in her own time, her department says, and did not declare it on any papers because there was no financial interest.
Nevertheless, it is known that money from those companies finds its way into the agency, formerly the Public Health Laboratory Service, through other research channels. In a recent annual report, Dr Miller listed five "non-personal" interests - ie payments which benefited her department rather than herself. Two of the companies featured were MMR defendants.
The rules on conflict are weak, open to interpretation and generally not enforced - so should any criticism not be dished out in equal measure? As one leading journal states "examples of potentially conflicting interests that should be disclosed include relationships that might detract from an author's objectivity in presentation of study results and interests whose value would be enhanced by the results presented." How can Sir Liam Donaldson, chief medical officer, and his deputy responsible for immunisation, Dr David Salisbury, justify their attacks on Dr Wakefield for non-disclosure of an interest when their own staff appear equally compromised? No doubt Dr Miller sought clearance before agreeing to act for the defendant drug companies. But every time she now opens her mouth the question arises: Is she speaking from the "impartial "view of the health department, open to all new research that comes to its attention; or for that of the defendant drug companies? As Eye readers will recall, Dr Miller also conducted the first ever trial of MMR among 10,000 children before its introduction in the UK nationwide.
It is clear the medical establishment and ministers had been waiting for an opportunity to attempt to discredit Dr Wakefield. Thus they seized on the Sunday Times's resurrection of a debate about conflict which emerged in the Lancet six years ago when Dr Wakefield published his controversial 1998 study.
Shortly after publication the Lancet carried a letter from Dr Wakefield on behalf of all the authors in response to suggestions that there may have been "litigation bias" in their paper. It said that Dr Wakefield had agreed quite separately to evaluate a small number of children on behalf of the Legal Aid Board. "These children have all been seen expressly on the basis that they were referred through the normal channels (eg. GP, child psychiatrist or community paediatritican) on the merits of their symptoms." Nothing about that "conflict" has changed but Lancet editor Richard Horton seemed to panic in the face of more serious - and completely unsubstantiated - allegations from the Sunday Times about subjecting the children to invasive procedures without ethical approval and questions about the Lancet's role in the affair - allegations the newspaper was forced to ditch.
Interestingly, Horton's condemnation of the Royal Free paper as "fatally flawed" ( which gave oxygen to the Sunday Times "scoop") was dropped by the time the Lancet published its statement about the affair the following week. It stated that it was "regretful" that the Lancet had not been made aware that the parallel legal aid had not been disclosed as it should have been " because it would have been material to our decision-making about the paper's suitability, credibility and validity for publication". It did not withdraw the paper or say it was fatally damaged.
Of course the issue of potential conflicts of interest - whether by Dr Wakefield or those acting as experts for the defendant drug companies - only flags up the possibility of research flawed by bias. Before a study can be "fatally flawed", as health chiefs maintain Dr Wakefield's is, the research itself must be shown to be faulty.
Aside from the fact that even Horton accepts that the Royal Free team identified a new syndrome suffered by children with gut disease and autism ( something so scientifically and medically significant, one might think it worthy of investment and further investigation), that original paper is now the equivalent of scientific chip wrappings. Science has moved on; and the Royal Free team has published more papers detailing the unique pattern of disease in these children's guts.
In both the UK and the US, meanwhile, measles virus, some of it vaccine strain, has now been found at the site of inflammation in the guts, in the blood and in the spinal fluid of some autistic children but not in "normal" children. Separate studies at Utah State University have found that some autistic children have auto-antibodies which are attacking the protein sheath that protects the nerve and brain in those children, researchers found a higher level of measles virus antibodies and an "unusual MMR" antibody, whereas their response to other vaccines did not differ between autistic and normal children.
None of this proves causation or a link; but combined they do provide a mechanism for brain damage and one potential trigger that might lead to autism. And that surely needs further investigation.
Last week, while some newspapers and the medical establishment queued up to kick Dr Wakefield, a new US study of children defined as autistic by the US department of education and the biological surveillance summaries of the Center for Disease Control found "a biological plausibility and epidemiological evidence showing a direct relationship between... measles containing vaccines and serious neurological disorders". It also found a relationship between mercury containing vaccines and neurological disorders, the subject of litigation in the US. At the top of the study the authors, Dr Mark Geier and David Geier, both declare a potential conflict of interest in that they have been expert witnesses or consultants in areas involving adverse reactions to vaccines in civil litigation.
In May last year Dr Miller - in her role as head of immunisation at the HPA, rather than as an expert for the drug companies - was critical of the Geiers' earlier work. As indeed was Britain's Committee on Safety of Medicines, which found "serious methodological" flaws. But as the Daily Mail and other newspapers reported last week, that committee and the Joint Committee on Vaccination and Immunisation is packed with experts who either have shares in the defendant drug companies, receive funding for research from them or are paid advisers to them.
As the Eye reported in 2002, three of the members who sat on the Medical Research Council's review of the ten-fold rise in autism were advisers to the defendant drug companies. Even the chair had shares in one of the companies.
The point is that potential conflicts of interest are common in medical and scientific research and development and Dr Wakefield's is but a puff in the wind. Ninety percent of research depends on big business and the pharmaceutical companies - and this is set to rise. The big companies already have a direct line to the prime minister through the Pharmaceutical Industry Competitive Task Force (PICTF), which Tony Blair set up after a meeting with the heads of AstraZeneca, GlaxoWellcome and SmithKlineBeecham.
The companies have already stated that they see the NHS as a huge unexploited resource. And the government's own reforming NHS Plan 2000 states that; "The pharmaceutical industry is a UK success story, employing over 60,000 skilled workers and maintaining an annual trade surplus of over £2 billion. The industry is also the UK's leading investor in research and development. The NHS has a major role to play in ensuring that the UK remains an attractive base for the industry." Hence it has set about removing barriers to big business in the drug industry, encouraging hospitals and universities to enter into joint ventures and create mini-companies to exploit their research. They will inevitably become even more dependant on drug company influence - and even more at risk of serious conflicts of interest. Yet no one is shouting about that.
* * *
Genuine Concern or Corporate Greed? Interesting Conflicts Part II
[By Brad Johnson for The Daily Camera.] http://www.dailycamera.com/bdc/broomfield_opinion/article/0,1713,BDC_2504_26
88134,00.html
Does Senate Bill 139 represent genuine concern or corporate greed? Follow the money.
SB 139 will set forth a statewide database of all Colorado's children. The system will be used to call parents and coerce them to have their children "fully" vaccinated. This means the child must have every single recommended vaccine.
When I was a child I only had two immunizations: polio and smallpox. These shots were for serious diseases that affected large populations. I am truly grateful for advances in modern medicine that have eradicated deadly diseases. Today, though, Colorado's children are required to receive 29 vaccinations by the age of 4. The risk of children contracting some of these diseases is miniscule.
For instance, the hepatitis B vaccine is promoted as necessary for infants and schoolchildren yet the over a period of years there was only one chronic case of Hepatitis B in the birth through age 4 category. The calculated average would be less than four in a million cases. These are the children who contracted the disease from their infected mothers. Children of infected mothers should be the only children needing this vaccination. In that same time period there were only 15 cases in the birth through 14 years age group. According to the Colorado Department of Public Health Environment fact sheet: "Hepatitis B is not spread through casual contact or in a typical school, office or food service settings. It is not spread by coughing, sneezing, or drinking out of the same glass." The Centers for Disease Control admitted there is not one documented case of transmission of hepatitis B from sharing toothbrushes, razors or ear piercing. Most important, the American Association of Physicians and Surgeons has declared that children are more at risk of being harmed by the vaccine than the disease.
Why the drastic increase in vaccine requirements for diseases posing no risk to most children? Is the vaccine industry really concerned about the welfare of our children, or have our children become a captive market for the vaccine industry? To answer these questions we must follow the money.
Congressman Dan Burton was instrumental in uncovering the corporate profit connection to the increase in vaccine requirements. His interest started when his perfectly healthy grandson turned autistic overnight after receiving nine inoculations in one office visit. These vaccinations contained 40 times the toxic level of mercury for humans. He became determined to uncover the truth. What he discovered is sickening, if not shocking. A majority of the members on the committees that approved vaccines had financial ties to the pharmaceutical companies that produce the vaccines. Either they were being paid as consultants or lobbyists, or owned vaccine patents or stocks in the pharmaceutical company. One member owned a patent for the vaccine being approved and was also being paid by the pharmaceutical industry to travel around the country and promote vaccines as safe. This is tantamount to letting the vaccine industry write their own profitable government mandates. When committees approve a vaccine as safe, federal funds are released to buy the vaccines from the manufacturers.
Follow the money. "The vaccine manufacturer of a new vaccine that is added to the universal list has an assured stable market of three-and-a-half to four million babies born in this country every year. As of 1986, the manufacturer has virtually no liability for adverse events that may occur .... No liability. Stable made market. A stockholders dream," said Barbara Fischer of the National Vaccine Information Center.
Corporate Executives of the major vaccine manufacturers have invested millions of dollars into the creation of a framework for a national database to tag and track citizens to enforce compliance with government vaccination policies. SB 139 fits perfectly into their plan.
Around the country parents have been threatened with losing custody or losing insurance coverage if their children were not "fully" vaccinated.
Section 1 (1) ( c ) of SB 139 states: "The Colorado Department of Health and Environment has a stated performance goal to increase the number of "fully"
immunized children ..." Why "fully" immunized when some vaccines are unnecessary and cause more harm than good? According to the American Association of Physicians and Surgeons: "the federal government pays the state a bonus of up to $100 for every "fully" vaccinated child. What's their motive-money or medicine?" The state does not receive the money if a child is exempted from just one vaccination.
If SB 139 passes, responsible parents who choose to exempt their child for valid reasons will be pressured by the Colorado Department of Health into full compliance.
* * *
AWARENESS
Lifting the Veils of Autism, One by One by One
[By Erica Goode in the New York Times.] http://www.nytimes.com/2004/02/24/health/psychology/24AUTI.html?ex=107864162
3&ei=1&en=aa069c2203c9b946
He is blond and 3 years old, 33 pounds of compressed energy wrapped in OshKosh overalls.
In an evaluation room at Yale's Child Study Center, he ignores Big Bird, pauses to watch the bubbles that a social worker blows through a wand, jumps up and down. But it is the two-way mirror that fascinates him, drawing him back to stare into the glass, to touch it, to lick it with his tongue.
At 17 months, after several ear infections and a bout of the flu, the toddler's budding language skills began to deteriorate, his parents tell the evaluators. In the playroom, he seems intent on his own activities and largely oblivious to the adults in the room. Only when the therapist bends down to tickle him does he give a blinding smile and meet her gaze with startling blue eyes.
Sixty years after it was first identified, autism remains one of the most puzzling of childhood disorders. Its cause or causes are still unknown. But in recent years, investigators have begun to dislodge some of its secrets.
Studies have offered clues to the brain mechanisms that may lie behind some features of autism the tendency to focus on objects rather than human faces, for example and geneticists have begun to home in on genes that may be involved. Scanning has provided glimpses of ways autism may affect brain
development: the brains of autistic children, studies find, appear to be larger than normal for some time after birth.
In the future, experts say, such research may yield effective medical treatments to augment or even replace the intensive behavioral therapy that is the prescription most autistic children now receive.
In learning more about autism, a disorder that in some form affects at least 425,000 Americans under 18, scientists may also increase knowledge about language development, emotion, even friendship and love.
"Ultimately, research on autism may teach us a lot about what it means to be social," said Dr. Thomas Insel, the director of the National Institute of Mental Health.
Autistic children were once thought to have a form of childhood schizophrenia. Prone to repetitive, sometimes self-destructive behaviors and driven by "a powerful desire for aloneness and sameness," as Dr. Leo Kanner of Johns Hopkins put it in a now classic 1943 paper, they often spent their lives in institutions. Parents watched helplessly as their children disappeared into a world beyond their reach.
But much has changed. The notion that autism was caused by "refrigerator" mothers and absent fathers, promoted by psychoanalysts in the 1950's and 1960's, has yielded to the realization that the disorder is strongly rooted in genetics and abnormalities of brain development and function. Environmental influences early in life may also play a role.
At the same time, a sharp rise over the last decade in the number of autism cases diagnosed in the United States and other countries has raised public awareness and helped secure more government financing for research.
In the 2003 fiscal year, the National Institutes of Health spent an estimated $81.3 million on autism research, compared with $9.6 million in 1993.
The last two decades have brought a sea change in the way scientists view autism and those who suffer from it.
Researchers now recognize, for example, that autism is not synonymous with mental retardation: more than 80 percent of children with autism were once thought to be mentally retarded.
More recent estimates place the number at 70 percent, or lower if related disorders are included.
Dr. Kanner believed autism to be a product of upper-middle-class homes, a conclusion based on the children he examined, who were the progeny of doctors, lawyers and scientists. But it is now clear that autism crosses class boundaries.
Boys are four times as likely as girls to have the disorder. This sex ratio has led one researcher, Dr. Simon Baron-Cohen, director of the autism research center at Cambridge University in England, to speculate that autism is a form of "extreme maleness," but the theory has yet to be supported by research.
More rigorous studies have allowed clinicians to identify autism in children of younger and younger ages. In the past, the disorder often was not diagnosed until children were 4 or 5. But by studying home movies of birthday parties or first baths, investigators have found telltale signs of autism in children of 12 months or younger.
Dr. Geraldine Dawson, director of the University of Washington's autism center, for example, studied infants from 8 to 10 months old who were later identified as autistic. The infants, she said, often failed to respond when parents called their names.
"Even very young babies, when you call their name, will turn and look at you," Dr. Dawson said.
As toddlers, autistic children show other differences. For example, they make eye contact less frequently, and, unlike most 1-year-olds, do not point at objects or people.
Autism's hallmarks are a delay in language development, an inability to relate to other people and stereotyped or rigid behavior. But researchers have found that children vary greatly in the nature and the severity of their disabilities.
"If you put 100 people with autism in a room, the first thing that would strike you is how different they are," said Dr. Fred Volkmar, a professor of child psychiatry at Yale and an expert on autism. "The next thing that would strike you is the similarity."
Some children attend regular schools, others are so disabled they require institutional care. Some children speak fluently, others are mute. Some are completely withdrawn; others successfully navigate a path through the outer world.
In fact, studies show that many children with autism can improve with treatment, and some from 15 to 20 percent, experts say recover completely, holding jobs and living independent lives.
Yet the realization that autism takes many forms has also made its diagnosis more complicated. In 1994, psychiatrists added a new diagnostic category Asperger's syndrome to the psychiatric nomenclature, to take account of children who displayed some features of autism but did not meet the full diagnostic criteria.
Many researchers view Asperger's as distinct from autism. But the differences become blurred in cases where children have normal or above normal I.Q.'s. In such instances, experts say, whether Asperger's or autism is diagnosed is often arbitrary.
"I don't think anyone's got good evidence for a clear distinction between people with high-functioning autism and Asperger's," said Dr. Tony Charman, a researcher in neurodevelopmental disorders at University College London.
The Disconnect Calculations, Yes; Eye Contact, No As a child, Donald Jensen lay in bed at night, tracing numbers in the air with his finger. He memorized lottery numbers. He was riveted by the pages of the calendar.
Now 19, his facility with mathematical calculation seems magical. Given any date Jan. 7, 1988, for example he can, in an instant, identify the day of the week it fell on. (It was a Thursday.) He virtually never makes mistakes.
Yet even in childhood, there were signs that Donald was exceptional in other ways. He was mesmerized by the washing machine, becoming upset if the laundry was finished before he got up in the morning. He started talking late. Once, when his grandmother slipped on some ice in the yard and fell, he continued to chatter about numbers, seemingly oblivious to her plight.
Problems in school led doctors to diagnose autism when Donald was 6, his uncle, Glen Jensen, said. As an adult, Donald's gifts he is among the 1 to 10 percent of people with autism known as autistic savants connect him to the world. "What day were you born?" he asks visitors.
But the things that Donald cannot do also separate him from other people. He rarely makes eye contact. Ask him how he calculates dates or what numbers mean to him and the inquiries are met with silence. His ability to empathize with other people has grown over the years "John was angry today, and that was upsetting to me," he will say but unexpected events disturb him, and his conversations sometimes take the form of asking questions over and over.
"Many of our clients know the currencies of all
countries in the world, but they cannot go to McDonald's
and buy a burger and count the change"
What lies at autism's core? Over the decades, researchers have come up with a variety of theories. But most were based on what clinicians observed, not on what might be going on in the brain. Only recently have sophisticated technologies allowed researchers to begin bridging the gap between the consulting room and the laboratory.
Dr. Ami Klin, an associate professor of child psychology and psychiatry at Yale, and his colleagues began with the observation that people with autism often have a great deal of intellectual knowledge, but lack "street smarts," and are unable to use what they know in social situations.
"Many of our clients know the currencies of all countries in the world, but they cannot go to McDonald's and buy a burger and count the change," Dr. Klin said. "They know all the bus ramps, but can't take a bus."
In a series of experiments to find out why it is so difficult for someone with autism to function in the world, the Yale team , including Warren Jones, a research associate, developed a device for tracking eye movements that could be mounted on the brim of a baseball cap. Then they had subjects, who either had autism or did not, watch a video clip from the 1967 film "Who's Afraid of Virginia Woolf" and monitored their gaze.
The normal subjects closely tracked the social interactions among the actors in the films, focusing especially on the actors' eyes. In contrast, people with autism focused on objects in the room, on various parts of the actors' bodies and on the actors' mouths.
In one scene, Richard Burton and Elizabeth Taylor kiss. The subjects without autism looked at the actors' embrace; the autistic subjects' eyes went elsewhere: one man stared at a doorknob in the background.
Such research suggests that from birth, the brains of autistic children are wired differently, shaping their perception of the world and other people. "In normal development," he said, "being looked at, being in the presence of another, seeking another most of what people consider important emerges from this mutually reinforcing choreography between child and adult."
If this duet cannot take place, Dr. Klin said, "development is going to be derailed."
Studies using brain scanning techniques like fast M.R.I. lend weight to the idea that for people with autism, perception molds behavior.
"There is a deep relationship between what we see and what we know," said Dr. Robert Schultz, an associate professor at Yale's Child Study Center.
Researchers have long known, for example, that people with autism have difficulty recognizing faces. In non-autistic subjects, a brain area called the fusiform gyrus is activated in response to the human face. But when pictures of unfamiliar faces are shown to children or adults with autism, studies show, the region is less active.
Dr. Schultz said that autistic people appear to identify faces the way other people identify objects, by piecing features together. While most people are better at recognizing images of faces when they are right-side up, autistic subjects identify them faster when they are upside-down.
Twin studies also argue for a large genetic
component. Identical twins, the studies suggest, run a 60
to 85 percent chance of having autism or a similar disorder
if their twins have it. For fraternal twins, the chances
are 10 percent.
A recent study, presented at the annual meeting of the American Association for the Advancement of Science in Seattle this month, illustrates this. Dr. Dawson, of the University of Washington, and a colleague reported that when autistic adolescents and adults were shown pictures of faces, another brain area involved with object recognition was activated, while the fusiform gyrus remained quiet. Yet when the researchers showed photos of the subjects' mothers, the fusiform brain did light up.
Work by Dr. Isabel Gauthier, an assistant professor of psychology at Vanderbilt University, suggests that, in fact, the fusiform gyrus is not programmed to react to faces per se but to things that people care about and learn to distinguish in detail.
Dr. Gauthier trained people to become experts on "greebles," a class of simply-drawn imaginary beings. When the subjects became adept at telling one greeble from another, she found, the fusiform gyrus lighted up in response to pictures of the creatures. Similarly, when car experts were asked to identify different car models, the region was activated, Dr. Gauthier reported last year in the journal Nature.
Most experts now agree that autism is strongly determined by heredity. Studies indicate, for example, that if parents have one child with autism, the chance that they will have a second autistic child is 2 to 6 percent about 100 times the general risk.
Twin studies also argue for a large genetic component. Identical twins, the studies suggest, run a 60 to 85 percent chance of having autism or a similar disorder if their twins have it. For fraternal twins, the chances are 10 percent.
Two very rare forms of autism one associated with the congenital disease known as tuberous sclerosis and the other with fragile X syndrome are known to be caused by chromosomal defects.
[They] identified a gene that may contribute to schizophrenia,
announced in January that it would use the Icelandic population
to search for genes underlying autism.
But in most cases, autism is thought to have a more complex genetic origin, involving multiple genes acting together.
"The bulk of people with autism develop it because they have inherited a particular genetic predisposition," said Dr. Anthony Bailey, a professor of psychiatry at Cambridge.
Finding those genes, however, is a difficult task. The disorder is relatively uncommon, and most people with autism do not have children, making it difficult to track successive generations of a family.
To get around these obstacles, some researchers are studying families having two or more members with autism and searching for similarities in the genome that could provide the crucial link to the disorder.
Cure Autism Now, an advocacy group based in Los Angeles, has started a program to collect DNA samples from such families and use them for research.
Large-scale studies are in progress at a variety of institutions in the United States and other countries. DeCode Genetics, an Icelandic company that last year identified a gene that may contribute to schizophrenia, announced in January that it would use the Icelandic population to search for genes underlying autism and similar disorders like Asperger's.
Some researchers are also hunting for genes that may underlie specific aspects of autism.
Dr. Daniel Geschwind, director of the neurogenetics program at the University of California, Los Angeles is hoping, in a study of autistic children and their families, to find genes that contribute to the delayed development of language.
No specific gene for autism has yet been pinpointed. But promising areas have been identified on a variety of chromosomes, including the 2, 3, 7, 13, 15 and the X chromosome.
"My sense is that we are close to the tipping point in this illness," said Dr. Insel of the National Institute of Mental Health, "and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute."
At the same time, the disorder is not entirely genetic, indicating that some environmental influences, either during a mother's pregnancy or in the first years of life, have roles in setting off the disorder, perhaps by changing the way genes function without actually altering DNA.
Over the years, many candidates have been proposed, including German measles during pregnancy; yeast infections; the sedative drug thalidomide; childhood vaccines; viruses; the labor-inducing drug Pitocin; and dietary, hormonal or immune system changes during pregnancy.
But so far, researchers say, solid evidence for any single factor has not emerged. Still, several research groups are trying to address the issue of environmental triggers. A study based at Columbia University, for example, will follow 100,000 pregnancies in Norway, examining a variety of environmental influences, including infections, vaccinations, mercury exposure and prenatal stresses.
Experts disagree about the importance of environmental influences. But there is a consensus that autism probably has more than one cause, its symptoms the common end point of different biological pathways.
Yet it may be some years, experts say, before scientists are able to link the findings from genetic studies and brain research with the outer signs of the perplexing world that people with autism inhabit.
When it comes to autism, said Dr. David Amaral, a professor of psychiatry at the University of California at Davis,"In many respects, we're still in the dark ages."
* * *
LETTERS
About Siblings
Does anyone know what is the (anecdotal or scientifically documented) case history for siblings of autistic children who have not received any or some of the vaccinations that are at issue? My wife and I received the news of our son's diagnosis 3 months prior to giving birth to his sister, who is now 21 months old. Due to the potential correlation between the vaccinations (either due to thimerosal or other anti-immune issues) and autism as documented in your reports, we have to date withheld her from any shots. She has been participating in a sibling study, and her evaluations to date are looking pretty good (for not having Autism or other spectrum disorders), but she is not totally out of the woods yet. Our plan all along was to begin a vaccination program at some point when she had clearly passed the developmental stages that would "clear" her from having autism.
I would assume that our case is not in any way unique - indeed it does not really have to be restricted to siblings, but anyone who is concerned over the impacts of the vaccines on the children. The question boils down
to: to what extent are non-vaccinated children being diagnosed with autism? This to me seems to provide some insight as to the "proof" that the vaccines are truly causing this terrible problem.
Brian Sullivan Father to Kyle, aged 4 briansullivan@cablespeed.com
What's Wrong With this Format. . .
Any chance you can speed up the scanning of your newsletter by incorporating a "scroll to" feature in the content titles? To have the abilitiy to "click" pass uninterested items would be greatly appreciated.
- John Cascino Uncle to two autistic family members
The feature of which you speak is readily available through the HTML page format. However, our report is produced in plain text format which does not offer such shortcuts. We continue to use the text format over the HTML because a large portion of our readers are academics, professionals or students using older institutional systems that are restricted to the text format. Besides we generate between 11-and-12 million electronic pages per year. This easily uses at least one-third the bandwidth consumption of HTML pages, which is a consideration. The universities and other institutions are slow at changing over to HTML because text is more spam resistant not having graphic imaging. However, our monthly calendar and regional supplements are done in HTML, so we are inching in that direction. -LS
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READERS' POSTS
Grandmother of 4 year old boy with ASD. We are moving soon and need suggestions on good places to go. We are looking at Southwestern Ohio, Northern Kentucky, Southeastern Illinois, Southern Indiana, Columbus, Ohio, Cincinnati Ohio, Louisville Ky. Looking for places that have good schools, forward thinking Doctors, alternative medicine, social programs, etc. Decent jobs and housing are also of concern. Cheryl cas716@yahoo.com
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I am the mother of 3 boys. The older boys (11 and 9) are high-functioning autistic, and received all of the vaccinations right on schedule. My youngest is 3, has had no vaccinations and developing completely normal. I learned about the vaccine thimerosol issue while pregnant with my third son (thank goodness) and chose to not vaccinate. Does anyone know if a study has been done that looks at the lack of autism occurring in siblings that have not been vaccinated? We have participated in AGREE but don't know if this is an area being documented.. kelliston@comcast.net
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Important info left off March monthly calendar of events: Berard Auditory Integration Training sessions open for registration in Voorhees, NJ (April 9-18, 2004) and in Dover, Delaware (April 19 to 28, 2004). This is a ten day, non-invasive educational and therapeutic technique which trains people to hear all frequencies more evenly, to improve in the processing of auditory input, and to decrease hyper or hypo-sensitivity to specific environmental or speech sounds terries@execpc.com
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A support group is forming for parents of adult children with high functioning Autism/Aspergers Syndrome. Starting February 22, the group will meet on the fourth Sunday of the month from 10:30 AM 12:30 PM at Blythedale Childrens Hospital on Bradhurst Avenue in Valhalla. The group is sponsored by the Westchester Self-Help Clearinghouse, a program of Westchester Jewish Community Services. For information contact Judy at 526-3329 or Janet Younkin 914-761-0600, ext. 204 jyounkin@wjcs.com
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Amen Lenny Schafer! Your Response Commentary on Feb. 26 was right on. Thank you so much for saying out loud what I feel. mandy.coe@hubbardfeeds.com
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Need contact info for any autism parent organization calling themselves PACE, PAC or something similiar. Potential upcoming legal snafu regarding name of organization. Please respond ASAP to johnmargie@mac.com
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April Is Autism Awareness Month - Send cards that show your support for our kids with communication challenges. Symbolic Sentments cards, featuring picture symbols, are available from
www.GivingGreetings.com.[Thanks to Terrie Silverman for compiling these posts.]
>> FREE (Almost) READERS' POSTS <<
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for others with autism after you and yours, who seek
assistance from appreciated readers. Send submissions to:
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_________________________________________________________________
Lenny Schafer, Editor mailto:edit@doitnow.com
Edward Decelie Debbie Hosseini Richard Miles Ron Sleith Kay Stammers
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DISCLAIMER: All information, data, and material contained, presented, or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of the publisher, and is not to be construed or intended as providing medical or legal advice. The decision whether or not to vaccinate is an important and complex issue and should be made by you, and you alone, in consultation with your health care provider.