Public Health Communication

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

Lauren Sausser, Kaiser Health News notes that public health communication has improved since the start of the pandemic.

But some public health experts argue that agencies are still failing on messaging. Scientific terms such as “mRNA technology,” “bivalent vaccine” and “monoclonal antibodies” are used a lot in public health, even though many people find them difficult to understand.

A study published by JAMA found that Covid-related language used by state-level agencies was often more complex than an eighth-grade reading level and harder to understand than the language commonly used by the CDC.

“We have to communicate complex ideas to the public, and this is where we fail,” said Brian Castrucci, CEO of the de Beaumont Foundation, a charitable group focused on strengthening public health. “We have to own the fact that our communication missteps created the environment where disinformation flourished.”

Most Americans support public health, Castrucci said. At the same time, a small but vocal minority pushes an anti-science agenda, and it has been effective in sowing seeds of distrust, he said.

The more than 3,000 public health departments nationwide stand to benefit from a unified message, he said. In late 2020, the foundation, working with other public health groups, established the Public Health Communications Collaborative to amplify easy-to-understand information about vaccines.

“The good guys need to be just as well organized as those who seek to do harm to the nation,” he said. “One would think we would learn from this.”

Injury and Death

The Politics of Autism discusses the dangers facing autistic people, including wandering.

A release from Columbia University:

Deaths in individuals with autism increased 700 percent in the past 16 years and were three times as likely as in the general population to be caused by injuries, according to a new study by Columbia University’s Mailman School of Public Health. The findings are published online in the American Journal of Public Health. The average age at death for individuals with autism was 36 years younger than for the general population, 36 years of age compared with 72. Of the deaths in individuals with autism, 28 percent were attributed to injury, most often by suffocation, followed by asphyxiation, and drowning. Together, these three causes accounted for nearly 80 percent of the total injury mortality in children with autism. More than 40 percent occurred in homes or residential institutions. “While earlier research reported a higher mortality rate overall for individuals with autism, until now injury mortality in the autism spectrum disorder population had been understudied,” said Guohua Li, MD, DrPH, Mailman School professor of Epidemiology, and senior author. “Despite the marked increase in the annual number of deaths occurring, autism-related deaths still may be severely underreported, particularly deaths from intentional injury such as assaults, homicide, and suicide.”

Screening over 32 million death certificates in the U.S. National Vital Statistics System, the researchers identified 1,367 individuals (1,043 males and 324 females) with a diagnosis of autism who died between 1999 and 2014.   The annual number of documented deaths for individuals with a diagnosis of autism has risen nearly 7 times from 1999 to 2014. “Our study was limited to death certificate data. While the numbers are startling, autism as a contributing cause of death is likely undercounted because of the accuracy of information on death certificates filed by coroners varies,” noted Joseph Guan, the lead author and a master of public health degree student in Epidemiology at the Mailman School of Public Health.    The estimated prevalence of autism spectrum disorder is about four times as common in males as in females and higher among non-Hispanic white children and in children of highly educated parents. From 2000 to 2012, the rate has more than doubled. “Our analysis reveals that children with autism are 160 times as likely to die from drowning as the general pediatric population.  Given the exceptionally heightened risk of drowning for children with autism, swimming classes should be the intervention of top priority,” said Dr. Li, who is the founding director of the Center for Injury Epidemiology and Prevention at Columbia. “Once a child is diagnosed with autism, usually between 2 years and 3 years of age, pediatricians and parents should immediately help enroll the child in swimming classes, before any behavioral therapy, speech therapy, or occupational therapy. Swimming ability for kids with autism is an imperative survival skill.” 

Wandering is a common autistic behavior, and Dr. Li makes the point that many children with autism have an affinity to bodies of water. “With impaired communication and social skills, autistic kids tend to seek relief of their heightened anxiety from the serenity of water bodies. Unfortunately, this behavior too often leads to tragedies.” 

The study was supported by the National Center for Injury Prevention and Control, Centers for Disease Control and Prevention (grant 1 R49 CE002096).

Trump, Autism, and Public Health

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

Daniel Smith writes at The New York Review of Books:

Trump has frequently promoted his views on Twitter, in a number of his characteristic modes: brash certainty (“Massive combined inoculations to small children is the cause for big increase in autism…”), cartoonish storytelling (“Healthy young child goes to doctor, gets pumped with massive shot of many vaccines, doesn’t feel good and changes—AUTISM. Many such cases!”), shameless slander (“I am being proven right about massive vaccinations—the doctors lied”).
...
As of now, most Americans do not share Wakefield’s, Kennedy’s, or Trump’s paranoid views. A survey published this month by the Pew Research Center found that some 82 percent of Americans support requiring all students in public schools to receive the combined vaccine for measles, mumps, and rubella. In the realm of infectious disease, however, “most” isn’t adequate for full immunity, and there remain pockets of resistance. Rates of vaccination in affluent areas such as Orange County, where the Disneyland outbreak began, are significantly lower than average. The Pew study found that African Americans are particularly skeptical about the safety of vaccines. So, too, are younger parents. More than 40 percent of parents of children under the age of four believe that the risk of side effects from routine vaccinations are medium or high.

The danger we face—the grave danger—is that Trump’s support for the anti-vaccination position will expand these pockets of resistance. Children will get sick and die, needlessly and avoidably. The evidence is clear: vaccines are safe. They are also necessary. The facts are the facts, nonpartisan and empirical, and scientists will continue to espouse them. But Trump is Trump, heedless and stubborn in his ignorance. The health of our children is in his tweeting hands

Epidemic Pushback

In The Politics of Autism, I write about pushback against the disease frame:

Another signal was a 2013 public apology by Easter Seals after it sent out a mass email using the disease frame:  “On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right. Autism is not an epidemic. Autism is not a public health crisis.”  In the same vein, Los Angeles Times journalist Michael Hiltzik walked back from language that he used in a 2014 story.   “I have been taken to task, properly, for referring to autism above as `a terrible condition for its sufferers and their families.’ That's a narrow and ill-informed way of looking at a condition that many people on the autism spectrum feel has benefited their lives.” 

At Forbes, Emily Willingham writes that Minnesota Green Party chair Brandon Long is defending presidential candidate Jill Stein:

So how about that consultation with ASAN that Brandon Long says occurred? Like I said, I checked in with ASAN about it. This organization, which represents autistic people first and foremost—their motto is “nothing about us without us”—says it has been approached by numerous campaigns, from Clinton’s to Jeb Bush’s, and ASAN offers the same advice to any candidate who reaches out for them. In a statement to me about Stein’s remarks, the organization said:

We are deeply concerned by comments made referring to autism as a ‘public health calamity’ and ‘epidemic’, and the lack of any meaningful retraction of these remarks to date. Upon being approached, we communicated that concern, and made reference to longstanding policy priorities on autism and disability that have been shared with each candidate that has contacted us.

Along with ASAN, I and members of the autism community await that meaningful retraction and Jill Stein’s “platform positions on the issue.”

Autism, Ebola, Vaccines, CDC, and Conspiracy Theory

The Centers for Disease Control and Prevention is a major source for information about autism. If people are less confident about CDC, they might be less inclined to believe that information.  So a seemingly unrelated issue -- Ebola -- could affect autism politics. Even before the outbreak, a now-debunked conspiracy theory held that CDC had covered up evidence of a vaccine-autism link.

CBS reports:

Americans' faith in the agency charged with protecting the homeland from the rapidly escalating Ebola outbreak in West Africa -- which has already crept onto U.S. soil -- has dropped sharply since the crisis emerged.

A CBS News Poll has found that positive assessment of the Centers for Disease Control and Prevention has declined dramatically, with only 37 percent of respondents saying the CDC is doing an excellent or good job -- down from 60 percent in a May 2013 Gallup poll.

The CDC is rated more positively by Democrats (49 percent) than Republicans (35 percent).

Officials from the Obama administration, including the president himself, have acknowledged that missteps were made in the handling of the first confirmed Ebola case diagnosed inside the U.S; a Liberian man who died in a Dallas hospital on Oct. 8

Indeed, at iO9, Mark Strauss reports that anti-vaccine activists are already claiming that the Ebola outbreak is plot to divert attention from the conspiracy.

Vaccine Promotion May Backfire

Political scientist Brendan Nyhan is lead author of  "Effective Messages in Vaccine Promotion: A Randomized Trial," published online in Pediatrics on March 3.  The abstract:

OBJECTIVES: To test the effectiveness of messages designed to reduce vaccine misperceptions and increase vaccination rates for measles-mumps-rubella (MMR).

METHODS: A Web-based nationally representative 2-wave survey experiment was conducted with 1759 parents age 18 years and older residing in the United States who have children in their household age 17 years or younger (conducted June–July 2011). Parents were randomly assigned to receive 1 of 4 interventions: (1) information explaining the lack of evidence that MMR causes autism from the Centers for Disease Control and Prevention; (2) textual information about the dangers of the diseases prevented by MMR from the Vaccine Information Statement; (3) images of children who have diseases prevented by the MMR vaccine; (4) a dramatic narrative about an infant who almost died of measles from a Centers for Disease Control and Prevention fact sheet; or to a control group.

RESULTS: None of the interventions increased parental intent to vaccinate a future child. Refuting claims of an MMR/autism link successfully reduced misperceptions that vaccines cause autism but nonetheless decreased intent to vaccinate among parents who had the least favorable vaccine attitudes. In addition, images of sick children increased expressed belief in a vaccine/autism link and a dramatic narrative about an infant in danger increased self-reported belief in serious vaccine side effects.

CONCLUSIONS: Current public health communications about vaccines may not be effective. For some parents, they may actually increase misperceptions or reduce vaccination intention. Attempts to increase concerns about communicable diseases or correct false claims about vaccines may be especially likely to be counterproductive. More study of pro-vaccine messaging is needed.  [emphasis added]

The Biggest Threat

The Washington Post reports:

The wave of aging "baby boomers" needing public health services in Northern Virginia -- once thought to be the greatest healthcare and fiscal threat facing local governments in the coming decades -- will be far outnumbered by the skyrocketing percentage of young adults with autism diagnoses, Fairfax County human services officials said Tuesday.

According to statistics compiled by the Fairfax County Public Schools, 1 in 83 enrolled students are now diagnosed with some form of autism, an 846 percent growth since 1997.

"That is a niche that's not being covered and those families are struggling," said Board of Supervisors Chairman Sharon Bulova (D).

Pat Harrison, a deputy county executive in Fairfax overseeing human services programs, said the county's 65-and-older population will reach 138,000 by 2020, but that the population of young adults with autism is growing at a far faster rate.