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Parents of autistic children react to news that study was falsified

By Jed Boal | Posted - Jan. 6, 2011 at 4:55 p.m.



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SALT LAKE CITY -- A controversial study that linked autism to vaccines and frightened a lot of parents to stop vaccinating their children, is now labeled a fraud.

"You're looking for answers. You want the truth," says Jared Andes, a parent of a 4-year-old autistic boy. "You don't want somebody to trick you, or to tell you something that's not true, when you're trying desperately to find answers and help."

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The British Medical Journal claims the author, Dr. Andrew Wakefield, deliberately faked data to prove his argument. The 1998 study has since been retracted and Wakefield stripped of his medical license in Britain. Medical experts say measles cases in Britain and the U.S. went up because frightened parents did not have their children vaccinated for it.

The medical director of the Carmen B. Pingree Center for Autism in Salt Lake City says plenty of Utah parents of autistic kids accepted that research, and many probably still will. Dr. P. Brent Petersen says this delicate debate still leaves parents with emotional questions unanswered.

"Some of these kids, in spite of all that we do, still don't learn to talk," Dr. Petersen says. "That's a terrible burden for parents, and when you don't have the cure, guess what happens? You look for all of the possibilities."

We caught up with Andes at the autism center as he was playing with his son in class and working with him on communication skills.

"My wife really subscribes to the whole vaccine idea," he says. "I was kind of back and forth on it."

As a parent of an autistic child, Andes says it's easy to feel guilty about their child's health and what they might have done wrong. Some doctors told them vaccines led to their child's autism, others disagreed. "I don't feel like it is now," he says, referring to the accuracy of the Wakefield work. "My wife still feels like it probably is."

The Wakefield study linked the measles, mumps and rubella vaccine to autism. Investigative journalist Brian Deer says Wakefield essentially made up the data on the 12 children who were the focus of that study for financial gain. Most of his co-authors withdrew their names after learning he was paid by a law firm that intended to sue vaccine manufacturers.

"We know that there are probably now more than 14 studies that show that vaccines aren't the real answer to the autism, quote, 'epidemic,'" says Petersen.

The medical director at the autism center says more than half of the parents there accepted the now-questioned study.

"We've tried to be evidence-based, and supportive of parental concern," he says.

Petersen says many once-hopeful cures and causes over the years put parents of autistic children on an emotional roller coaster.

"My fear is that rather than accept this, the hard-core believing parents will see this as another sequence in the conspiracy between government and drug companies who manufacture vaccines," the doctor says.

Jared Andes says his son loves the center as much as they do, and his progress is something they can truly believe in.

"I think a lot of people will still hang on to that research, just because there is no definitive answer on what causes autism," says Andes. "Until there is, I think a lot of people are going to think that it's still vaccines."

Wakefield says his work has been "grossly distorted." He says he has been the target of "a ruthless, pragmatic attempt to crush any attempt to investigate valid vaccine safety concerns." He says he's "not going to go away."

E-mail: jboal@ksl.com

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Jed Boal

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