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To reporters on the eve of Autism Awareness Month

March 24th, 2014 · 11 Comments · Critical thinking, Research

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 factually 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.

sick-tpwrtrIn the six years that I’ve been monitoring America’s anti-vaccine movement, 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 tricked into balancing scientific fact with unconfirmed anecdote. By 2004, nearly every major news media outlet in the US 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 were just too tempting.

The idea never made much sense to vaccine researchers, but editors were too busy following the controversy to notice. They saw Andrew Wakefield, a British gastroenterologist ,whose 1998 Lancet article jump-started the moribund US 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 three years ago. These days, among major media outlets, only Fox News can be counted on to give anti-vaccine propaganda the time of day. Otherwise, the major networks and newspapers long ago learned their lesson – there is no “other side” to the anti-vaccine movement. Vaccines don’t cause autism, and the consequences of not vaccinating are far, far worse than the one in a million chance that a child might suffer serious harm from a vaccine.

But news media have, for the most part, wised up, thanks to Wakefield’s perfidy and downfall. His Lancet article loaded the anti-vaccine movement’s Beretta, but reporters gleefully squeezed the trigger, over and over. That stopped, for the most part, when Wakefield lost his UK medical license and subsequently fled to America to spend me time with his fellow grifters in the autism cure industry.

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 fall off the wagon, 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 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 means 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 of 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 (we’re 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’re hooked yourself a conspiracy theorist with possible mommy issues.

Third,  check information first hand. 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 “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 first hand.

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 wide variety of behaviors, from very severe to just quirky. 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.

 

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11 responses so far ↓

  • 1 Matt Carey // Mar 24, 2014 at 8:17 pm

    I don’t think “just quirky” would get an autism diagnosis. However, while a sizable fraction of autistics have intellectual disability as well, many do not. Some fraction, a small minority, live independent and unsupported lives. With much greater effort than non autistics.

    I think your timeline is off. Mr. Wakefield fled England well before he lost his license. He lost his job, though. His hospital offered him support to prove his theories but he chose to leave rather than give up academic freedom. How being given money and support to work in a research position in an teaching hospital on one’s own project lacks “academic freedom” is beyond me.

  • 2 Erika Froiland Kaye // Mar 24, 2014 at 11:30 pm

    I would not say that a ‘sizable’ fraction of people with autism also have an intellectual disability. So do, some don’t. In my experience (and I’ve worked with A LOT of people with autism), they DON’T have a cognitive disability; many have very high IQs. Also, let’s talk about PEOPLE with autism, not ‘autistics’. As for Mr. Wakefield, the Lancet learned that not only was his research very flawed, but that he was in the process of developing a different ‘safe vaccine’, which he hoping to cash in on after trashing current vaccines. He had a serious pecuniary interest in scaring the public about the current available vaccines, and society has paid a huge price, with outbreaks of previously eradicated diseases (eg, measles, whooping cough), which kill children who are too young to be vaccinated, people who have compromised immune systems, and the elderly.
    Mr. Wakefield has turned modern medicine back decades or longer, and now we have epidemics of diseases that used to be eradicated.

  • 3 Erika Froiland Kaye // Mar 24, 2014 at 11:34 pm

    People with autism

  • 4 Julian Frost // Mar 24, 2014 at 11:54 pm

    @Erika Froiland Kaye:

    let’s talk about PEOPLE with autism, not ‘autistics’.

    No, let’s talk about “autistics”. As somebody on the spectrum, I don’t “have” autism”, I AM autistic. It is a part of me as fundamental as my eye colour or fingerprints.
    Re your comments on Andrew Wakefield, we know all this. Brian Deer did an excellent job of exposing his mendacity and conflicts of interest. In fact, I’ve blogged about it, as has Matt Carey.

  • 5 Lisa Jo Rudy // Mar 25, 2014 at 3:45 am

    I wish that it were as easy as “check your sources,” or “check your facts.”

    But in my experience the usual ways of checking sources (checking in the NIH pubmed index for example) turns up plenty of very questionable “studies” and papers by people who publish precisely in order to confound people like me who have no access to journals and limited knowledge of study structures and statistics. which are the “good” studies? to my eye, it’s very tough to judge from an abstract and a citation!

    Meanwhile, legit organizations do, in fact, turn up things like a high association of GI problems with autism (which may or may not be relevant, but in theory COULD be relevant) along with associations to immune system issues which COULD (or COULD NOT) be connected with environmental insults.

    And while the world may not be experiencing an actual wave of new incidences of autism (though, then again, there MAY be a significant increase depending on who you ask!), they are most certainly experiencing a “tsunami” of diagnosed adults.

    The media (and the general public) have little time for or interest in the kind of real-world stories that say things like “there may or may not be a massive increase in the number of people with symptoms which are probably diagnosable with DSMIV autism thought they may not be diagnosable with DSM5 autism, and who have a wide range of symptoms some of which are disabling and some of which are managable.” That’s not a media story — that’s just the reality that autism is a giant muddle!

    Lisa

  • 6 lilady // Mar 25, 2014 at 8:26 am

    Autism is not a giant muddle…unless you use as your sources of information, crank anti-vaccine, anti-science websites as your sources of information about ASDs.

    I’m disgusted with the “journalists” at Age of Autism and their credulous readers who manage to “muddle” every bit of science, that is published, who don’t know the difference between incidence and prevalence, who label autistic kids as “vaccine damaged” and who subject their children to vile, invasive, painful, dangerous and not-clinically-indicated “treatments” to “recover/cure” autism.

  • 7 Matt Carey // Mar 25, 2014 at 9:03 pm

    “I would not say that a ‘sizable’ fraction of people with autism also have an intellectual disability. So do, some don’t.”

    Many do. I’ll go with data over experience.

    From the last CDC autism prevalence report
    http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm

    “Data on intellectual ability are reported for the seven sites having information available for at least 70% of children who met the ASD case definition (Figure 2). When data from these seven sites were combined, 38% of children with ASDs were classified in the range of intellectual disability (i.e., IQ ?70 or an examiner’s statement of intellectual disability), 24% in the borderline range (IQ 71–85), and 38% had IQ scores >85 or an examiner’s statement of average or above-average intellectual ability. ”

    I consider 38% sizable. The prevalence of ID in the general population is more like 1%.

    You can say “people with autism”. I’ll say “autistics”. Autistics are people. Not all caps PEOPLE, but people. If you don’t want to be a part of that discussion, I wish you well.

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  • 9 Sarah // Mar 28, 2014 at 11:20 am

    Andrew Wakefield’s ideas would have gotten a lot less traction with parents if the medical establishment had taken the digestive symptoms of autistic kids as seriously as they do those of typically developing children. Wakefield gave desperate families attention and help when no one else would. It doesn’t justify what he did, but there’s little wonder that people latched onto his willingness to address a problem that no one else would. If doctors had looked at the whole child and worked with parents to get their children who were (autistic AND sick) healthy Wakefield would never have developed the following that he did. I haven’t seen anyone write THAT story.

  • 10 Matt Carey // Mar 28, 2014 at 12:29 pm

    The flip side of that coin is that had Andrew Wakefield not tied GI disturbances to vaccine injury, the field would have received more attention sooner.

    What did Wakefield do to “address the problem”? Seriously? Did he come up with a valid treatment? (No). Did he accurately describe the issue? (No, he to this day says it’s inflammation but the recent study out of Sweden shows that it isn’t).

    Had Wakefield actually championed the cause of autistics with GI disease, he could have accomplished something. Instead he set that subfield back 10 years.

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