April is Autism Awareness Month, when the words "Somebody get me an autism story" can be heard in newsrooms across the country. Some reporters will answer the call with accurate, nuanced, informative pieces that add value to the public's store of knowledge. Others will just phone in their reports, literally and figuratively. And a few will embarrass themselves.
In the six years that I've been monitoring media coverage at Autism-News-Beat.com, there's been a sea change in how news and entertainment media have given voice to anti-vaccine advocates. There was a time when credulous reporters and editors could be hoodwinked into balancing scientific fact with unconfirmed anecdote. By 2004, nearly every major news media outlet in the U.S. had fallen for the ruse, reporting, for example, that the MMR vaccine "might cause autism." The lure of angry parents, defensive doctors, and tongue-tied CDC officials was just too tempting.
The idea never made much sense to vaccine researchers, but editors were too busy following the controversy to notice. They met Andrew Wakefield, a British gastroenterologist, whose 1998 Lancet article jump-started the moribund U.S. anti-vaccine movement. In 2000, 60 Minutes broadcast a parent's impassioned speech against the MMR vaccine, followed by Wakefield's opinion that the vaccine was not safe. In 2004, a more serious journalist, Brian Deer, uncovered Wakefield's real story: Crooked trial lawyers in the UK had paid him hundreds of thousands of pounds to fabricate a connection between the MMR and autism. The Lancet has since retracted Wakefield's article, and England's medical board revoked his license.
So news media have, for the most part, wised up, thanks to Wakefield's perfidy and downfall. His article loaded the anti-vaccine movement's Beretta, but reporters gleefully squeezed the trigger, over and over, then moved on.
Occasionally a major news outlet, or a media luminary, suffers a relapse. We saw that last fall when Katie Couric let her guests make up their own facts about the HPV vaccine, which saves lives and has an excellent safety record. And Fox News can always be counted on to misrepresent speculative research, recently reporting, for instance, that "autism disorders are greatly linked with environmental factors."
Bob Woodward, whose reporting rightfully drove a crooked politician from the White House, once outlined three things that a responsible journalist does when covering a story. They are worth reviewing.
First, check your sources. Is the man telling you that vaccines cause autism a bona fide researcher with relevant training and experience, or a disgraced gastroenterologist driven from his native country? Hollywood celebrities can reliably tell you how much fun George Clooney's pool house is, but they aren't reliable when it comes to matters of toxicology, immunology, pediatric neurology and other words ending with -ology.
Don't assume that just because somebody has an MD or PhD after her name, she's an expert on autism. A PhD chemist from Kentucky once tried to sell an industrial chelating agent as a diet supplement for autistic children, until the FDA shut him down. Apparently, diet supplements must be edible. The autism cure industry is rife with MDs who claim they are treating and "recovering" children with chemical castration drugs, stem cell transplants, hyperbaric oxygen chambers, anti-fungals and, I kid you not, bleach enemas. Jenny McCarthy's annual trade fair and revival meeting, AutismOne, promotes all these "treatments" and more.
Checking sources "means checking everything, talking to half a dozen or even a dozen people for a day story. If it's something longer, you want to totally surround and saturate the subject," says Woodward. That's good advice whether you're covering the Pentagon, the FDA, or autism.
Second, you need documentation. "I have not really ever seen a story in a newspaper or on television or even on radio," says Woodward, "that couldn't be enhanced with some sort of documentation that would support or add more detail to what the story is about."
On the autism news beat, the best documentation are peer-reviewed studies. This means the study has been published in a respectable scientific journal with a "high impact factor." Look it up. Be aware of "pay-to-play" journals that will publish just about anything for a price. Despite its respectable name, The Journal of American Physicians and Surgeons is one such pay-to-play journal. The ironically named Medical Veritas is another. Disgraced British gastroenterologist Mr. Andrew Wakefield started his own journal, Autism Insights, to publish articles that might exonerate his fraud. It didn't work.
If somebody tells you parents have recovered their autistic children with restrictive diets and fecal transplants (I'm not making that up), ask for documentation. Are there clinical trials? Where were the case studies published? If your source tells you the drug companies are blocking the studies because they can't make money from poop, then you've hooked yourself a conspiracy theorist with possible mommy issues.
Third, check information firsthand. Or as Woodward puts it: "Get your ass out of your chair and get over there." If your source is legitimate, you should be able to verify what she's telling you. A staple of Autism Awareness Month reporting is the "Somebody is helping people with autism" story. It could be a school district that just snagged a grant to help educate children with developmental delay. Or maybe a helper dog is making life better for a child with autism. These stories give us hope and are a welcome relief from the doom-and-gloom crowd who characterize autism, and thus some children and adults, as train wrecks and lost souls.
But there is a more troubling side to the "Somebody is helping" narrative. That's when a source tells you she is "recovering children" with restrictive diets, off-label drug use, and worse. Health care fraud is a $100-billion-a-year racket, and the bad guys know about autism. The illegitimate autism cure industry is a target-rich environment, but the only way you'll learn about it is to check your information firsthand.
Keep your stories simple and focused. Unless you are familiar with the autism news beat, the more you venture into the weeds, the more likely you are to leave your readers with the wrong impression. Keep these facts in mind:
- There is no evidence for an autism epidemic. It's tempting to write about autism rates "skyrocketing," "mushrooming" and "exploding," or about the coming "tsunami" of young autistic adults. But words like "rate" and "epidemic" have specific meanings. If you want to compare, say, the change in the number of children receiving autism diagnoses over the last 20 years, then talk to an epidemiologist about the difference between prevalence and incidence. Don't just assume.
- Autism covers a spectrum of disability. What connects these individuals is the need for support and accommodation. That's your story. What is the school, workplace, family, etc. doing to help these individuals become productive members of society? And how are families adjusting and coping with the disorder? Autism is not a death sentence. It's developmental delay, not stasis. These individuals continue to grow and learn and adapt, albeit at their own pace.
Above all, beware of your source's agenda. There is no credible evidence that autism is a medical condition. "We cannot cure what is not a sickness," says former Miss America contestant Alexis Wineman, who has autism. "But we can begin to understand autism, and help those with the condition to unlock the potential that lies within all of us." That's your story, too. If somebody tells you autism causes brain inflammation, is caused by a leaky gut, or can be fixed by a chiropractor, ask for proof. And don't hold your breath while you wait.