Autism News Beat

Reporting the news is fast-paced and deadline driven, and we don’t always have the time or space to say everything that needs to be said. Reporters can save time by relying on a story narrative or template into which they can plug facts, quotes and context.

There’s the “man struggling against great odds” narrative. The “little guy standing up to authority” narrative. The “relying on faith to cope with tragedy” narrative. And so no. Occasionally the narrative lapses into cliché, and uncritical repetition of talking points, or worse.

One of the more common narratives used in autism coverage is “parents vs. science”. On one side you have parents (usually mothers) who will do anything to “rescue” their children from autism. Sometimes this means raising large sums of money for unproven treatments, and devoting every moment to a child’s recovery through chelation, oxygen therapy, mega doses of vitamins, detox saunas and special diets.

But “parents vs. science” is really shorthand for “anecdote and conspiracy theories vs. scientific method.” How much more interesting would it be to explore why so many parents and even professionals cling to the outdated and unsupportable link between vaccines and autism? Call the purported connection controversial if you like, but among the best and brightest researchers, it is only slightly more credible than bodily humours or psychic auras.

Your readers deserve better. So does your editor.

Here’s some more clichés to avoid, and talking points to flesh out:

Desperate parents blame vaccines. It’s a myth that only desperate or gullible people succumb to the sirens of pseudoscience. Trained researchers can also be fooled by what they think they see. That’s why we rely on the scientific method – to control for personal bias and observational errors. Peer review research is another tool for detecting bias and error.

Anti-vaccine fanatics / zealots / hysterics / paranoids / fearmongers. What do you call people who jettison science and reason to make room for a cargo load of suspicion, fear mongering, and baseless assertions? Be polite, now. Anti-vaccine activist doesn’t capture the destructive nature of a movement that is impervious to reason, fearful of alternative points of view, and contemptuous of public health. Pre-scientific suggests a developmental delay, and leaves hope for recovery and redemption.

Thimerosal has been out of vaccines since 1999 / 2001 / 2003. Three important dates to remember. The FDA recommended that thimerosal be removed from scheduled pediatric vaccines in 1999. By Feb., 2002, a CDC spot check of 400 clinics found only 1.9 percent of the pediatric vaccines contained thimerosal. By 2003, the few remaining thimerosal containing vaccines (TCVs) in question had expired. These dates are important to understand, because they mean that children born after 2001 received far less thimerosal than older children. Only one in five U.S. children receive 1-2 flu shots (only some of which contain thimerosal) between the ages of 6 and 23 months. Ten years ago, 80-90 percent of kids received nine TCVs by the age of six months. So why aren’t we seeing a decline in autism? Obvious answer: because thimerosal has nothing to do with autism.

Research doesn’t support the link. True statement, but needs a qualifier – credible research doesn’t support a link. The gold standard in science is peer review, meaning a study has been vetted by neutral, third party experts. Anti-Vaccine Activists (AVAs?) wave reams of “studies” to prove the opposite. There’s no reason to pay attention. Providing the public with junk science and deliberate misinformation is not balance – it’s spreading propaganda. KOMU-TV in Columbia, Missouri visited a chelation clinic as part of its misguided Combating Autism from Within series. An “alternative” practitioner told a credulous student reporter “We are the most published clinic in the world on chelation. We have written over 30 papers on it.” KOMU neglected to warn its viewers that no peer reviewed study supports chelation as an effective treatment for autism. The clinic’s “papers” either had nothing to do with autism, or consisted mainly of conference presentations, opinion pieces, and non-peer reviewed research.

Autism rates are going up / down. Counting autism cases is problematic. The disorder is not a diagnosis so much as a description of a spectrum of behaviors. Not every autistic person flaps and spins or memorizes train schedules, and we may never know the true number of autistic people at any given time. What is certain is that the number of new diagnoses is not going down, which is what one would expect if thimerosal caused autism.

Autism is a genetic disorder / mystery. Best available evidence points to autism in most of its manifestations as genetic. It is pure speculation to suggest that autism is linked to vaccines.

Autism is caused by… [old moms, old dads, caffeine, alcohol, television, the internet, cell phones, Jenny McCarthy's perfume]. Correlation does not equal causation. The rooster may crow at dawn, but that doesn’t mean it causes the sun to rise. Agenda Driven Anti-Vaccination Activists (ADAVAs?) tell us ad nauseum that the “autism epidemic” of the 1990s coincides with an increase in the pediatric vaccination schedule. That has nothing to do with science, and everything to do with a conclusion in search of evidence.

In 2004 the Institutes of Medicine found no evidence that thimerosal in vaccines causes autism. That’s because the preponderance of evidence leads to an inescapable conclusion that favors rejection of a causal relationship. But scientists are a cautious bunch, so the IOM also noted that “epidemiological studies cannot rule out the possibility that vaccines cause autism in some small subset.” Autism causation studies cannot rule out lots of things, including old moms, old dads, caffeine, alcohol, television, Internet, cell phones, and Jenny McCarthy’s perfume, not to mention vaccines. Science does much better at finding, or not finding, support for hypotheses.

(Alert reader Isles notes than in the same report, the IOM concluded that no particular evidence exists for “the possibility that vaccines cause autism in some small subset.”)

The autism epidemic. The autism plague. Though the numbers are skyrocketing (and please let’s all stop using that word), the evidence for an actual epidemic is thin. To maintain otherwise is baseless speculation. So until we know for sure, can we stop telling autistic people, whom by the way have feelings, that they are sick and need to be cured? The more likely reasons for the increase are a broadening of diagnostic criteria, diagnostic substitution, greater awareness of autism, and more social services offered which compels more parents to seek out a diagnosis for their children. The alternative explanation is that government has engineered a huge cover up, then brainwashed a million or so physicians into keeping their yaps shut.

Covering autism with the respect and attention to detail that it deserves takes time, patience and hard work, and sometimes responding point-by-point to irrational positions with scientific references. Avoid sensationalism, be skeptical of unproven claims, and remain leery of improbable conspiracies.

h/t: Nancy Hokkanen at AOA