Paralegal Student is a Forceful Voice in Autism Debate

Kathleen Seidel is not a doctor. She's not a medical researcher. She's not an educator. She's not a lawyer. But the 52-year old Peterborough woman, armed with a degree in library science and a healthy sense of outrage, has become one of the leading voices in the public debate about a possible link between autism and vaccines.

Seidel's website, neurodiversity.com, is a clearinghouse for autism-related literature, and her attached weblog has become the site of an impassioned and thoroughly researched campaign against a group of scientists and lawyers who promote the theory that childhood vaccines cause the developmental disorder.

For Seidel, who guards her family's privacy but says she has a child with an autism spectrum diagnosis, the scientific evidence disputing their claims is overwhelming. A series of conclusive reports from government scientists have found no connection between autism and a mercury-based preservative once contained in vaccines. And Seidel said that her own family's experience has further cemented her belief that the disorder has a strong genetic component.

But those studies haven't persuaded a significant number of parents who believe that their children were poisoned by vaccines and suspect the U.S. government of denying its culpability. Their views are taken seriously. Nearly 5,000 are involved in a massive legal action to get compensation for their children, and many politicians and medical commentators stand behind the mercury poisoning theory. Among those who believe that mercury might cause autism are Sens. Hillary Clinton, John McCain and Barack Obama.

Seidel believes that the propagation of the theory causes many harms: It traumatizes parents, who believe their children have been poisoned and must be fixed; it harms children, who are subjected to medically unnecessary treatments designed to remove mercury from their bodies; it discourages vaccination, leaving children vulnerable to deadly diseases; and it distracts autism activists and researchers from the work she feels is most important.

"There's been a lot of energy, a lot of attention that been focused in an area that's not going to help disabled kids," Seidel said.

'1,000 percent'

Seidel describes herself as a "1,000 percent kind of person," who pours herself into her research and writing projects, generally spending about 30 hours a week on her website. That intensity is evident in her blog, where many posts run more than 5,000 words and contain quotations from medical journals, court documents and message groups where parents of children with autism share treatment experiences. She has made Freedom of Information requests for documents and sifted through historic archives on legal databases.

"I inhaled all the documents. I exhaled all the documents," Seidel said, describing one of her recent posts.

Seidel, who is married and has two teenaged children, has worked as a children's librarian and as an internet entrepreneur. In recent years, she has not had a full-time job, splitting her time between caring for her children, curating her website and taking college courses in paralegal studies. During a recent interview, she wore a floppy black hat over her dark frizzy hair and a T-shirt that said: "What we need more of is science."

Science hasn't settled the question of what causes autism, but it has largely ruled out the possibility that a mercury-based preservative called Thimerosal, used in childhood vaccines until 2001, is to blame. After a series of epidemiological studies, the Centers for Disease Control and Prevention, the Institute of Medicine, and the World Health Organization all agree that the evidence doesn't support the theory.

Recent studies indicate that about one in every 165 children has an autism spectrum diagnosis, meaning that they have problems with social interaction, language and repetitive behaviors. The disorder is described as a spectrum because cases range in severity. Some people with autism are able to succeed in school and live independently as adults. Others have persistent physical and behavioral problems and are never able to speak. Research suggests that the rate of autism diagnoses has not declined since Thimerosal was removed from vaccines.

Seidel's writing has focused on the group of researchers and lawyers who remain wedded to the vaccines-cause-autism theory, and her blog includes accusations of ethical lapses, plagiarism, conflicts of interest and inaccurate citation in their work.

Advocates and fans say her exhaustive research sets her apart and makes her blog a must-read for those who care about the scientific, legal and political swirl surrounding autism.

"She is the Erin Brockovich of autism spectrum disorders," said Irving Gottesman, a psychiatry professor at the University of Minnesota Medical School who studies the causes of autism and is convinced that there is no vaccine link. Gottesman compared Seidel's investigative work to what he'd expect from a research team of several graduate students working under a professor. "Amazing," he said, for an amateur. (more>>>)

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