The celebrities are back. Many of you will remember when, in 2007, actress and former Playboy model Jenny McCarthy published her book Louder Than Words, which attributed her son’s autism to vaccines. She and her boyfriend at the time, actor Jim Carrey, made the rounds of the talk shows, and McCarthy and her son appeared on the cover of People magazine. McCarthy became the face of the anti-vaccination movement, and the subsequent rise in vaccine hesitancy has been called “The Jenny McCarthy Effect” (Dominus 2011). It is important to recall that correlation does not mean causation, but the Google Trends data in Figure 1 shows a sustained increase in Google searches for “autism & vaccines” following McCarthy’s book launch media blitz. It’s also impossible to know who was searching and why, but for a time Jenny McCarthy was the undisputed leader of the anti-vaxx movement.

In 2008, McCarthy became president of Generation Rescue, an anti-vaccination organization that later experienced some problems. A report in Jezebel outlined how the organization was criticized for promoting unsubstantiated treatments for autism—including raw camel’s milk, CBD oil, and hyperbaric oxygen—some of which enriched Generation Rescue board members (Merlan 2019). In addition, the organization was sued by an Illinois contractor for not paying bills for work on an “integrative health clinic.” Generation Rescue finally relinquished the building to the contractors, and as of this writing the Generation Rescue website has expired.

In 2019, Rolling Stone magazine published a list of seventeen anti-vaccination celebrities, including Jenny McCarthy, Jim Carrey, Jessica Biel, Kristin Cavallari, Alicia Silverstone, Bill Maher, Rob Schneider, Lisa Bonet, Tony Braxton, Selma Blair, Jenna Elfman, Charlie Sheen, Mayim Bialik, Robert DeNiro, Kat Von D, Kevin Gates, and, until he reversed his position in 2019, Donald Trump (Dickson 2019). But perhaps the most active anti-vaccine celebrity other than Jenny McCarthy is Robert F. Kennedy Jr.

For a while things settled down a bit. In a 2014 interview in The Daily Beast, Jenny McCarthy said, “I’m not anti-vaccines” (Grove 2014), and she reported that her son Evan, now twelve, was doing well and no longer met the diagnostic criteria for autism. But as Generation Rescue faded from the scene, Robert F. Kennedy Jr. took up the slack, launching Children’s Health Defense in 2016, a group that continued to beat the anti-vaccination drum. Kennedy, whose uncle was a much beloved president of the United States and whose father was struck down by an assassin during his own presidential campaign, has been associated with a number of noble environmental causes, but his views on vaccines are so off-base and potentially harmful that in 2019, as reports of measles outbreaks were on the rise, three members of the Kennedy family wrote an open letter in Politico magazine titled, “RFK Jr. Is Our Brother and Uncle. He’s Tragically Wrong about Vaccines” (Kennedy Townsend et al. 2019).

Then came the coronavirus pandemic. As the response to this health crisis became politicized, Kennedy accelerated his anti-vaccination efforts. Children’s Health Defense released the film Medical Racism: The New Apartheid, which, according to NBC News, “promotes false claims that Covid-19 vaccination efforts are part of a larger, sinister experiment on Black communities” (Zadrozny and Adams 2021). Far from being quashed by the obvious effectiveness of the COVID-19 vaccines, Kennedy’s anti-vaccination efforts seemed to increase, taking advantage of people’s fears. Although the rapid success of the COVID-19 vaccines was a reminder of the life-saving benefits of vaccine technology, Children’s Health Defense has seized upon the coronavirus pandemic as an opportunity to spread both old and new conspiracy theories.

Now Come the False Treatments

Because several rich and famous figures in the anti-vaccination movement are parents of autistic children, perhaps it was only a matter of time before their credulity about the causes of autism morphed into credulity about treatments for autism. This has become quite evident with the release of two new books about miracle reversals of the intellectual deficits associated with severe autism. Both books were purportedly coauthored by a parent and their nonspeaking autistic child. I Have Been Buried Under Years of Dust by Valerie Gilpeer and Emily Grodin tells the story of Emily, the child of two Encino, California, attorneys, who after attending a variety of schools and educational programs, finally finds her voice through the use of facilitated communication (FC), the thoroughly discredited communication method that readers of this column know very well. The theory of FC suggests that for many children autism is a physical condition rather than a cognitive one and that many autistic people have active minds trapped in broken bodies. FC involves a facilitator or “communication partner” holding the autistic person’s hand, elbow, or shoulder to help steady them as they type on a keyboard or tap out words on a letter board. Without exception, all controlled tests of authorship have shown that—much like a Ouija board session—the communication partner is unconsciously typing the words, not the nonspeaking person (Vyse 2018).

 

Gilpeer and Grodin’s book is published by the William Morrow imprint of HarperCollins Publishers, and it has been favorably—and credulously—reviewed in The Washington Post, National Public Radio, and the Los Angeles Review of Books. In addition, Valerie Gilpeer and Emily Grodin, accompanied by Emily’s facilitator, appeared in an “Ed Talk” event sponsored by the Ed Asner Family Center, named after the beloved actor who played Lou Grant on The Mary Tyler Moore Show. The Ed Asner Family Center was founded by Asner’s son Matt Asner and Matt’s wife, Navah Paskowitz-Asner, who is the mother of two boys with autism. The Ed Asner Family Center describes itself as “a one-stop shop for neurodivergent individuals and their families seeking wholeness in all attitudes of life” (“About us” N.d.). Much of its programming appears to be wholesome entertainment geared toward families with special needs children. But the interview of Gilpeer and Grodin is unfailingly praising and uncritical (see the YouTube video of the interview below).

 

YouTube video of an interview of Valerie Gilpeer, her daughter Emily Grodin, and Emily’s “communication partner” by Matt Asner and Navah Paskowitz-Asner of the Ed Asner Family Center.

 

In March 2021, J.B. Handley and Jamison Handley released Underestimated: An Autism Miracle, another memoir purportedly coauthored by a nonspeaking man with autism and his father. J.B. Handley was managing director of Swander Pace Capital, a private equity firm, and is currently a founder and managing director of Boichi Investments. Rather than FC, Jamison Handley uses the newer variation of FC known as spelling to communicate (S2C). In this version, the nonspeaking person is not touched by the communication partner. Instead, the communication partner holds a letter board in the air, and the autistic person points at letters on the board with their finger or a pencil. The proponents of this method have assiduously avoided the kinds of double-blind testing that would demonstrate with certainty whether the nonspeaking person was the author of the words tapped out, and because the board is always held in the air by another person, the possibility of influence by the communication partner is quite real. As a result, the American Speech-Language-Hearing Association (ASHA) does not support the use of S2C.

The Handley book is identified on the spine and the title page as a “Children’s Health Defense book.” It is not surprising that Underestimated is published by Robert F. Kennedy Jr’s Children’s Health Defense, because Generation Rescue, the anti-vaccination organization for which Jenny McCarthy assumed leadership in 2008, was founded by none other than J.B. Handley. He has been an anti-vaccination activist for almost two decades, and now he is a pro-S2C advocate. Both McCarthy and Kennedy have used their platforms to promote the book. McCarthy interviewed J.B. Handley on her YouTube channel (see below), and over on the Children’s Health Defense website, Kennedy, McCarthy, and Handley conducted a panel discussion about the book. Kennedy was “blown away” by Underestimated.

Jenny McCarthy interviews J.B. Handley on her YouTube TV Show.

Do Celebrities Matter?

This story of the rich and famous suggests they have no particular grip on science—but do they influence others? Based on how frequently celebrities appear as pitch-makers on television, it seems that advertisers believe they do. My nonscientific observations suggest that celebrities who promote social or political causes on social media platforms are frequently vilified, and more systematic research on the effects of celebrity endorsement of political issues reveals their effects to be quite mixed. For example, one study found the effects of celebrity political endorsements depended upon how much the celebrity was liked (Nownes 2012). After finding that a disliked celebrity endorsed a political party, respondents reported a diminished view of the party. Conversely, an admired celebrity improved attitudes toward the party the celebrity endorsed. But how do you know in advance that the celebrity you use will be liked?

Another study looked at the effect of congressional testimony by celebrities versus noncelebrities. Again, the effects were somewhat mixed. Celebrity testimony was about three times as likely to garner newspaper coverage as noncelebrity testimony, but when the researchers looked at the resulting public interest in the topic of the testimony as measured by Wikipedia searches, there was no difference between celebrity and noncelebrity testimony. The researchers suggested that celebrity is itself a media-constructed concept and that media coverage does not always result in attitude change among the general public. Furthermore, they suggest that celebrities are more likely to be effective in creating change by using their greater access to politicians. As evidence of this point, in January 2017, Robert F. Kennedy Jr. met with then–President-Elect Donald Trump, who himself frequently expressed vaccine skepticism on the campaign trail. Kennedy reported that Trump wanted him to head a commission on “vaccine safety and scientific integrity” (Merica 2017). Trump spokesperson Hope Hicks quickly released a statement indicating that no firm decision had been made about creating a commission, and the commission never materialized. But the episode underscores the value of celebrity in gaining access to power.

It is clear that Robert F. Kennedy and his Children’s Health Defense organization—supported by the rich and famous—will continue to spread false information about the causes of and treatments for autism, but science-minded people can take some small comfort from research showing the limited influence of celebrity.

My final recommendation: if you want to listen to celebrities, pick ones who gained their fame by being trusted spokespeople who know what they’re talking about. Pick people like Dr. Paul Offit and Dr. Anthony Fauci.

References

About us. N.d. Ed Asner Family Center. Available online at https://edasnerfamilycenter.org/about-us/.

Dickson, E.J. 2019. A guide to 17 anti-vaccination celebrities. Rolling Stone (June 14). Available online at  https://www.rollingstone.com/culture/culture-features/celebrities-anti-vaxxers-jessica-biel-847779/.

Dominus, Susan. 2011. The crash and burn of an autism guru. The New York Times (April 21). Available online at https://www.nytimes.com/2011/04/24/magazine/mag-24Autism-t.html.

Grove, Lloyd. 2014. Jenny McCarthy: I am not anti-vaccine. The Daily Beast (October 24). Available online at https://www.thedailybeast.com/jenny-mccarthy-i-am-not-anti-vaccine.

Merica, Dan. 2017. Trump team denies skeptic Robert F. Kennedy Jr. was asked to head vaccine commission. CNN (January 10). Available online at https://www.cnn.com/2017/01/10/politics/robert-f-kennedy-jr-donald-trump-vaccine-commission/.

Merlan, Anna. 2019. Jenny McCarthy’s autism charity has helped its board members make money off dangerous, discredited ideas. Jezebel (March 20). Available online at https://jezebel.com/jenny-mccarthys-autism-charity-has-helped-its-board-mem-1832461139.

Nownes, Anthony J. 2012. An experimental investigation of the effects of celebrity support for political parties in the United States. American Politics Research 40(3): 476–500.

Townsend, Kathleen Kennedy, Joseph P. Kennedy II and Maeve Kennedy McKean. 2019. RFK Jr. is our brother and uncle. He’s tragically wrong about vaccines. Politico Magazine (May 8). Available online at https://www.politico.com/magazine/story/2019/05/08/robert-kennedy-jr-measles-vaccines-226798.

Vyse, Stuart. 2018. Autism wars: Science strikes back. Skeptical Inquirer Online (August 7). Available online at /exclusive/autism-wars-science-strikes-back/.

Zadrozny, Brandy, and Char Adams. 2021. Covid’s devastation of black community used as ‘marketing’ in new anti-vaccine Film. NBCNews.com (March 12). Available online at https://www.nbcnews.com/news/nbcblk/covid-s-devastation-black-community-used-marketing-new-anti-vaxxer-n1260724.