Sifting through the pages of newspapers, most people reading stories about autism would think scientists are primarily grappling with understanding how environmental factors, such as childhood vaccines, might contribute to the condition.
But the truth is quite different. The efforts of the scientific community to explore autism lie predominantly in brain and behavior research.
This disconnect between the scientific community and the popular media is starkly laid out in a study published in the February issue of Nature Reviews Neuroscience by researchers at the Stanford University School of Medicine.
The researchers found that while 41 percent of research funding and published scientific papers on autism dealt with brain and behavior research, only 11 percent of newspaper stories in the United States, United Kingdom and Canada dealt with those issues. Instead, 48 percent of the media coverage dealt with environmental causes of autism, particularly the childhood MMR vaccine for measles, mumps and rubella that was once linked with autism in a widely refuted study. Only 13 percent of published research was about environmental triggers of autism.
“What was very interesting is that media frequently reported being very skeptical of the MMR evidence, as was scientific literature,” said Judy Illes, PhD, associate professor of pediatrics and senior author of the paper. The media stories accurately reflected scientific thinking, but didn’t reflect the breadth of scientific research including the genetics, treatment and epidemiology of autism.
Illes and her co-authors — Joachim Hallmayer, PhD, associate professor of psychiatry and behavioral sciences, and research associate Jennifer Singh — conducted the study because they were interested in exploring how people react to new scientific discoveries. In some cases, these discoveries can lead to large-scale changes in the way people think or behave. Likewise, shifts in public values can cause broad changes in the direction of scientific thinking. The group dubbed this behavior “flocking.”
“It characterizes the way people, scientists and organizations flock to and from certain ideas, tools and, like birds, goals and destinations,” said Illes, who directs Stanford’s Program in Neuroethics. In some cases, this flocking may be caused by the way the media portrays an issue, the researchers say.
One example of flocking came from a 1993 hypothesis that listening to classical music could improve cognitive skills in infants. This finding resulted in a flocking effect by toy manufacturers and parents, and even sparked 1998 legislation in Georgia to distribute classical music CDs to all expecting parents. All this despite the scientific community’s rejection of the concept. Other examples of flocking include the rush to lobotomies during the late 19th century despite adverse effects on personality and lack of widespread scientific support.
For a current look at the differences between science and the public perception of science, the researchers focused on autism. The Centers for Disease Control estimated that one in every 250 babies born in 2005 would develop the disease, which is characterized by impaired social, communication and imaginative skills. This disease is one with complex, poorly understood causes, and is an active area of research in neurobiology in part because of the increased incidence in recent decades. It is also a disease that has already seen flocking behavior on the part of parents who feared giving the MMR vaccine after the disputed 1998 paper suggested a link between the vaccine and autism.
The Stanford team divided autism research into six categories: brain and behavior, genetic, environment, treatment, epidemiology and other. Singh then categorized research spending, published research papers and stories about autism in the media. What she found was a sharp disconnect between the conversation scientists were having via published papers, and what the public learned about autism through the media.
Autism researchers were focused primarily on topics relating to brain and behavior, genetics and treatment options. The public, on the other hand, primarily heard about environmental causes of autism, most prominently the much-maligned childhood MMR vaccine.
Illes said the study, which was funded by the National Institutes of Health, highlights the need for scientists to talk with the public about their work. She cited previous research showing that the media tends to report research that can result in action on the part of readers—lists of do’s and don’ts to keep kids healthy, for example.
Although genetics research doesn’t fall into that easy formula, Hallmayer, who studies the genetic causes of autism, said parents whose children have the disease would benefit from greater insights into the scientific process. “I think a better understanding of what we consider to be evidence and not evidence would help the public understand what they can expect out of scientific research,” he said.
At the same time, Hallmayer said the public’s interest in the environmental causes of autism is being heard. The new NIH funding roadmap includes a push to better understand what environmental factors may be responsible for the rise in autism rates.
The ability of the public to shift science policy is part of the conversation Illes hopes to encourage. “If we could get people from both groups to the table rather than relying on the media as an intermediary, we could break down some boundaries of understanding and move forward,” she said.
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