BURLINGTON - Politicians from opposite ends of the spectrum may be able to put differences aside to participate in an autism conference this weekend, but those with conflicting ideas about the best way to treat the condition apparently cannot.
Rep. Bernie Sanders and Gov. Jim Douglas will both be keynote speakers at the three-day "miniDAN!" Conference at UVM. But while the gathering will be held at the Billings Student Center, UVM's School of Medicine has chosen not to co-sponsor, or even endorse, the event.
DAN! - the acronym stands for Defeat Autism Now! - is a nonprofit organization known for pursuing alternative, and sometimes controversial, treatments for autism, including nutritional supplements, dietary changes and detoxification. After UVM opted not to act as a co-sponsor, Autism Support Daily, a local nonprofit support group, booked the Billings Center anyway, some say in a back-door effort to lend scientific credibility to its cause.
The symposium has exposed the animosity between parents who are understandably passionate about trying to help their children and a medical establishment seeking to adhere to standards of scientific proof so as to neither offer false hope nor do harm.
Kevin Mulholland, a Bristol internist and father of four, has a 12-year-old son with autism. "These aren't bad people," he says of those who pursue non-traditional approaches. "They're just desperate. What they believe is just not based in science."
Laurey Tedeschi has a very different view. The Burlington woman who founded Autism Support Daily claims people like Mulholland "haven't read the studies and are taking their cues from the American Academy of Pediatrics and NIH," she says. Tedeschi, like many who turn to DAN! for advice, believes that mainstream medicine has conspired to withhold information about the risks associated with thimerosal, a mercury-containing preservative often used in vaccines. Many blame the substance for their children's autism.
More than 60 years after it was first described, autism now affects about one in 166 American children, double the frequency of just 10 years ago. Over the past eight years, the number of children in Vermont with autism-related disorders has grown an average of 20 percent per year, according to the Agency of Human Services.
Yet the condition remains mysterious, with no known cure and endless theories about its cause. Experts even disagree on whether the increasing numbers point to an epidemic or simply reflect better, more inclusive criteria for diagnosis.
The inability of conventional medicine to find a cure or, in some cases, an effective treatment, has sent some parents of children with autism scrambling for alternatives - and not just in response to the thimerosal controversy. Treatments of the gastrointestinal problems associated with autism and related disorders are also hotly debated. As many as 60 percent of affected children are using complementary and alternative medicines, according to current estimates.
Steven Contompasis, a developmental pediatrician at UVM who studies autism, chose not to be formally interviewed for this story. However, he forwarded previous writings in which he acknowledges the struggle families face when dealing with autism and its related conditions and symptoms. "We think it is important for pediatricians and students to recognize this issue and remain in good dialogue with families," writes Contompasis. "The desire to cure the child's autism by finding the cause is certainly a strong motivator to parents of diagnosed children."
That trend is reflected in the recent publication of the best-selling Evidence of Harm, a provocative study of the autism epidemic that takes on the thimerosal debate. Meanwhile, the Centers for Disease Control, the American Academy of Pediatrics and Institute of Medicine have all concluded that there is no causal relationship between thimerosal-containing vaccines and autism. Nonetheless, as a precautionary measure, thimerosal was removed from all routinely recommended vaccines for U.S. infants two years ago, with the exception of inactivated influenza vaccines. Seven states have banned thimerosal completely.
Tedeschi is convinced her son was harmed by vaccinations he received at 18 months. "He was not born with autism," she says of Jagger, now seven. "I just know he was injured biologically."
The DAN! stand against immunizations is precisely why UVM chose not to get involved in the event, according to Contompasis. Mainstream practitioners worry not only about the risks associated with not immunizing a child; many also fear that the blood-cleansing chelation therapy used by parents in an effort to rid their child's body of mercury can be dangerous, even deadly.
"Pediatricians need to balance supporting parents in their endeavors and assuring safety for the child," says Contompasis. He recommends counseling families "to be careful not to burn out in their quest for a cure that takes them away from other successful or proven interventions or therapies."
Tedeschi has clearly not felt supported, judging from the ASD press release she sent out to announce the conference. "The claimed professional experts within the state of Vermont have... chosen to avoid, ignore, even dismiss questions and interest brought forth by parents regarding alternative-based biomedical approaches," she writes - strong words from a conference organizer who recently courted the governor to be a keynote speaker.
It's unclear whether Gov. Douglas was aware of the release - and, if so, why he would choose to speak at an event sponsored by a group so openly critical of state experts. His office did not return calls for comment.
[This section of the story has been corrected from the print version of this article published 09.06.06.]
Sanders, on the other hand, has been openly supportive of ASD and its desire for more information about both thimerosal and alternative therapies in general. Last spring, he met with members of ASD, and last year he introduced two bills related specifically to increasing funding for autism education.
Parents of children with autism who are not seeking alternative therapies seem satisfied with the help they have received from autism professionals throughout the state. "We've gotten everything we've ever needed," says Mulholland, whose son has received 30 hours per week of occupational, speech and behavior therapy at no cost to the family.
But for those still desperate for a cure that conventional medicine has yet to provide, the reluctance of the medical establishment to even consider alternative approaches is infuriating.
"My main objective is to help Jag get well," says Tedeschi. "There's nothing more. It comes from my heart. I would give no less than every single ounce of myself to my son . . . I do believe I will recover Jag. I am certainly going to try. No physician is going to tell me I can't."
DAN! Conference, September 8-10, Billings Student Center, UVM. Info, http://www.danconference.com.