SAN FRANCISCO, Sept. 26 (UPI) -- With neither side ceding, the war of words, and mindsets, over the causes of autism continues -- in full view of the Web-surfing world.
Making use of digital communication that gives them unprecedented access to a global audience, the challengers of orthodoxy question the validity of studies that nix a connection between autism and vaccines.
For its part, the much larger group supporting such research results also has an online outlet on the numerous public health, pediatric group and university sites the medical establishment urges parents to visit.
As it stands, despite mounting and often-cited evidence mainstream medicine maintains its acquittal of vaccines in the rise of autism diagnoses in America's children, the minority movement convinced of their culpability is growing in number, momentum and tenacity.
When in May 2004 the esteemed independent Institute of Medicine -- a component of the National Academy of Sciences that serves as the country's premier science adviser -- judged theories trouncing the mercury-based preservative thimerosal once widely used in childhood vaccines and those implicating the measles-mumps-rubella shot to be scientifically unsupportable and urged investigators to turn their attention to more "promising" areas of research, many considered it a coup de grace to the vaccine-autism proposition.
They couldn't have been more wrong.
One year to the month later, in a highly visible show of no confidence in the conclusions, the freshly minted Generation Rescue launched a nationwide campaign to resurrect the theory many thought had been laid to rest.
During a news conference called in San Francisco to mark the event, as well as its own formation, the organization rejected the vaccine-clearing findings as based on "vastly manipulated epidemiological studies."
Instead, the advocates offered their own take on the causes of autism -- in a full-page ad appearing in leading U.S. newspapers.
"Autism is preventable and reversible," the defiant headline proclaimed.
"It is critical that we have all the facts about this epidemic, including recent developments about autism's relationship to mercury poisoning and how the right detoxification treatment can entirely reverse the disorder."
The ad then invited readers to visit the Web site of the group "founded for parents by parents (and) dedicated to empowering parents with the truth to help their children heal."
Just what that truth is depends on who you ask and, in the end, on who you trust.
For parents torn by persuasive forces pulling in opposite directions, that can be a tough call -- one that leaves little room for error, considering its potentially life-altering consequences.
Misjudging the evidence, believing in the wrong cause can condemn a child to needless suffering.
The mercury-malady relation may be in dispute, but that the ambiguity hurts children is not.
If the vast and venerable majority is right, thousands of youngsters undergoing the detoxifying chelation technique advocated by groups like Generation Rescue are being unnecessarily exposed to a process most mainstream physicians regard as ineffective at best and risky, even potentially deadly, in the worst-case scenario.
If the small but significant contingent of parents, doctors and their supporters have the answer, then thousands others are struggling with an ailment that could be alleviated with an already available therapy.
It is a dilemma unfamiliar to past generations, which rarely questioned whether "doctor knows best" -- but all too common for modern-day families who, in the absence of clear-cut answers, may no longer be certain where to turn for advice.
The unknowns surrounding autism mirror those lingering over attention-deficit/hyperactivity disorder, depression and other diversions from the "norm" that underwent a definition overhaul during the radical shift, from psychological to biological, in the foundations of psychiatry and its view of mental illness.
The change was both driven by and reflected in dramatic revisions in the diagnostic manual that broadened criteria and, critics contend, blurred lines between wellness and illness.
As with other psychiatric conditions, the search for definitive answers about autism has run up against the lack of an objective, biological test for a disorder whose manifestation can vary from barely noticeable to severely disabling, the blending of symptoms of co-existing ailments, the elusiveness of its causes and the always-obfuscating shadow of controversy.
Against such odds, the reach for certainty has proven a stretch.
What inroads have been made in understanding the enigmas of autism were paved in large part by dedicated mothers and fathers, who have pushed tirelessly to put their children's welfare on researchers' and politicians' radar.
Left largely to fend for themselves, parents in the 1960s and 1970s began coming together for counsel and support.
The modest move, kicked off to serve families with the most severely disabled children, turned into a major movement that encompasses families on the entire range of the autism spectrum and embraces a science community with global reach.
Among other feats, parents established or co-founded -- in a mere four years, between 1994 and 1998 -- three leading entities in autism research: Cure Autism Now, the University of California, Davis, M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute, a major center launched in collaboration with clinicians and researchers and the National Alliance for Autism Research, the first U.S. organization dedicated to funding and facilitating biomedical studies of the disorder.
In 2002 the threesome initiated the International Meeting for Autism Research, an annual forum for autism data exploration and exchange.
A mere three years later the conference attracted 700 of the top scientists in the field.
Among other major developments, they reported the discovery of potential biological markers in the blood and behaviors that might lead to diagnostic tests at birth, evidence of autism as a disorder of the immune system as well as of the brain, clues to the location of genetic regions implicated in the disorder and hints of the involvement of such environmental poisons as PCBs.
"What ... has changed is that we've had some very powerful organizations that have come onto the scene in the last 10 years," said CAN Director Peter Bell. "We've created a field for autism research when essentially very little existed 10 years ago."
"There were maybe about a dozen people who were dedicated and spending significant amounts of time doing autism research," he added, "and what that number is today is well over 600."
Parental pressures have prodded the passage of the Children's Health Act of 2000, which created eight centers of excellence devoted to autism research, spurred the Centers for Disease Control and Prevention in Atlanta to launch unprecedented surveillance studies and, most recently, instigated the introduction of a bipartisan bill, called the Combating Autism Act of 2005.
The bill, passed by the Senate and referred to a House committee Sept. 6, would commit an unprecedented $860 million in federal funds for autism research, screening, treatment and education, in effect doubling the National Institutes of Health's current funding level in this area.
(Note: In this multi-part installment, based on dozens of reports, conferences and interviews, Ped Med is keeping an eye on autism, taking a backward glance at its history and surrounding controversies, facing facts revealed by research and looking forward to treatment enhancements and expansions.)
Next: High stakes, deep passions mark search for answers
--
UPI Consumer Health welcomes comments on this column. E-mail: [email protected]
