Autism, chelation & the anti-vax movement: The role of Autism Speaks
This is Part 2 in my series about the vaccine/autism myth & the pseudoscience of chelation for autism. Read Part 1 here.
From its founding in 2005 until 2016, Autism Speaks, American’s largest autism charity, platformed the myth that autism could be caused by the MMR vaccine. The message was amplified due the fact that the group’s co-founder, Bob Wright, as a Vice President of NBC, had unprecedented media access. This amplification perhaps began in 2007, when Wright’s wife, Suzanne, told journalist Larry King:
Polio, in the ‘50s when we were growing up, it was one in 3,000 and it was a national health crisis. Everyone rallied around the fact that we needed to find a cause and a cure. Now we have—1 in 10,000 was 10 years ago, 1 in 166 was 3 years ago. The CDC numbers are now 1 in 150, 1 in 94 boys will be diagnosed with autism. This is truly a national and a global epidemic.
Wright’s daughter, Katie Wright had taken her autistic son to see Andrew Wakefield, the pathologist who claimed autism and the MMR vaccine were connected. She appeared to support the MMR/vaccine myth, hiring contractors for Autism Speaks that supported the theory (with one earning $100,000 from the charity in 2007, according to tax records).
At that time, exploring antivaccine views was part of a broader mission of Autism Speaks to find a cause for autism. Its longstanding mission statement identified the organization as “dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.” The organization was even a sponsor of a National Autism Association event at which Wakefield was a speaker.
In Autism Speaks’ first 5 years, it stated on its website: “It remains possible that immunization may trigger the onset of autism symptoms.”
For its views, the organization faced immense public pressure, as well as pressure from within. As Alison Singer, who resigned as an executive at the charity said upon leaving in 2009, it was well past time to "move on":
“If you keep looking under the same rock, you're going to keep finding the same thing. Over and over, the science has shown there is no causal link between vaccines and autism. It's time to look for answers in new and different places.”
The Washington Post was one of the first mainstream media outlets to report that Autism Speaks was directly funding research into potential links between autism and the MMR vaccine.
Meanwhile, other media outside of NBC were embracing the sensationalism of the autism-MMR myth. As Hotez noted, the hype around Wakefield’s hypothesis was prime time news.
“On multiple major news outlets, including CNN, Fox, MSNBC and the major networks I hear over and over again about the vaccine-autism ‘controversy,’ as though there really is a controversy about whether vaccines cause autism.”
Citing 60 Minutes, Rolling Stone and Salon, he noted that Rolling Stone had platformed Robert F. Kennedy’s anti-vaccine screed “Deadly Immunity”.[1]
It didn’t take long for celebrities to get involved in the Wakefield hype. In the early 2000s, actress Jenny McCarthy appeared on Oprah Winfrey and Larry King Live to give her theories on the causes of autism (including the MMR vaccine) after her son was diagnosed. In the coverage, McCarthy described using Google to get information about autism. It was on Google that McCarthy encountered the yeast community, which focuses on yeast in the body as an alleged source of a myriad of illnesses and conditions, including autism. “Evan was excreting yeast out of every part of his body,” she told Winfrey. (cited in Offit, 241).
McCarthy jumped from ideas about yeast, diet and detox to the idea that the MMR vaccine caused autism, telling Oprah:
McCarthy: First thing I did—Google. I put in autism. And I started my research.
Winfrey: Thank God for Google.
McCarthy: I’m telling you…
Winfrey: Thank God for Google.
McCarthy: The University of Google is where I got my degree from.[2]
McCarthy’s story was compelling in part because she positioned her autistic son as a hero, in contrast to the behaviourists’ portrayal of autistic children as “little monsters” and inhuman beings lacking empathy.[3] She was also able to portray parents like herself with sympathy, as heroes for their children who were victims of a medical disaster, in contrast to earlier ideas by Bettelheim and other psychologists that autism was caused by a lack of nurturing from their “refrigerator mothers”.
Although McCarthy was wrong about vaccines, she was right about the humanity of autism families, and parents tuned in. At the time she appeared on Oprah, while fewer autistic children were being placed in residential institutions, special education classrooms across America and Canada were still replicating many of the strategies of the institution in segregated “special” classrooms--including restraining students, isolating them in locked rooms and inflicting other cruel punishments. The quickest answer to the human rights abuses these children faced was not to fix our social institutions and work for inclusion, but to remove autism from the child him or herself.
This was especially compelling for parents whose child appeared to suffer a developmental regression in toddlerhood, which temporally coincided with the administration of childhood vaccines. The concept of regressive autism, caused by a vaccine, made it easier for parents to imagine there was an original or “normal” child hidden inside their autistic child—a child they could understand, with a “normal” life on the horizon.[4]
The iconic stock images for autism in those times--a desperate child trapped behind a window--summed up the view that autistic children needed to be freed. McCarthy and Autism Speaks’ vision was that they could liberate autistic children of their autism altogether by exorcising the “toxic insult” that caused it. According to this belief, once the toxin was removed, the child would be normal and return to a safer life, at school and, as they developed into adults, in the broader world.
The neurodiversity movement, which included some parents, provided a powerful reality check to the dream of “detoxifying” autism out of a child, reminding parents that not only were these strategies ineffective, they could also directly harm children with the message that they were toxic and broken.[5] But without a media megaphone for our views, the neurodiversity movement’s emerging efforts did not reach the same audiences as the work of McCarthy and other parents (in some ways, we were stuck behind the pane of glass ourselves).
McCarthy and Autism Speaks had major news media at their fingertips. We in the neurodiversity movement had…well, we had blogs. Lots and lots of blogs that de-bunked the vaccine autism myth. We had a few allies in the science community, but other than Offit, Hotez and a few others, most seemed more interested in using autistics as a foil against antivaxxers than addressing the issue with sensitivity and nuance. Without media relationships or many allies, it would take sheer wits and determination for us to help shift the narrative.
RFK, Donald Trump & trouble at Autism Speaks
Like McCarthy, Robert Kennedy Junior campaigned around the vaccine-thimerosal theory, editing a book on the topic in 2015, Thimerosal: Let the Science Speak. Because of Kennedy’s credibility among those concerned about pollution, his book about toxicity from vaccines was more palatable and convincing to a broader audience than the original, rather dry, paper by Bernard and his colleagues. With the imprimatur of the Lancet on the vaccine-autism theory for more than a decade (until Wakefield’s paper was retracted), combined with media access from Autism Speaks, Kennedy forged connections that opened up a whole new sector for anti-vaccinationists, among environmentally-minded Americans. In addition to his writings, Kennedy held press briefings as well as rallies in major US cities, claiming that the CDC was covering up the vaccine-autism connection.
The Wrights had friends in powerful places, such as Donald Trump and Home Depot co-founder Bernie Marcus. Marcus, who had given $25 million in seed money to start Autism Speaks, was one of Donald Trump’s largest campaign contributors in his Presidential election runs.[6] In 2012, when a reporter asked Trump for his thoughts on the rising prevalence of autism, Trump shared a sympathetic view on Katie Wrights’ vaccine stance:
“Well, I’ve been very much involved in it over the years. I have some great friends, Bob and Suzanne Wright, who used to head up NBC, as you remember, and they’ve really devoted their life to autism. They’ve had a serious event take place in their family, and they’re fantastic people, and I’ve helped them over the years, and we’ve had fundraisers at Mar-a-Lago and other places, and I’ve gotten to be pretty familiar with the subject.
“And, you know, I have a theory, and it’s a theory that some people believe in, and that’s the vaccinations.[7]”
Meanwhile, as childhood vaccine rates continued to fall, public health experts scrambled to combat the noise. Despite the FDA requiring thimerosal to be removed from vaccines (which the agency had been recommending prior to Wakefield’s paper, for a variety of non-autism-related reasons), families were still looking for something to blame for autism.
In the UK, MMR vaccination rates had dropped by 10 per cent between 1998 and 2003, and was as low as 60 per cent in one region. By 2016, measles (formerly eliminated in the UK) had become endemic. As Hotez pointed out in 2019, “the high rates of vaccine exemptions is now reaching a point where epidemic childhood infections once thought to be vanishing are now reappearing”.[8] In addition to measles, other previously vanquished vaccine-preventable diseases were re-emerging in under-vaccinated communities (17, 59).
In 2013, the American Academy of Pediatrics created a listing of major scientific papers debunking the vaccine-autism myth; the list was 21 pages long and included both case-control studies and retrospective cohort studies that captured data from millions of children. Yet was 2 more years before Autism Speaks officially acknowledged that vaccines do not cause autism. As JK Trotter and Nicole Einbinder reported in Insider, Eric London, a member of Autism Speaks’ scientific affairs committee resigned in 2009 due to, in his words, “the position which Autism Speaks is taking concerning vaccinations."
That same year a prominent autistic advocate, who had taken note of the charity’s gigantic platform and had endeavored to make change at the organization, resigned from his position as the sole autistic member of the charity’s board.[9] Best-selling writer John Elder Robison described trying to make change and being unable to within the organization. He wrote:
“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.
“Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”
Partnerships with Autism Speaks have been overwhelmingly verboten in the autistic self- advocacy community, where the organization’s reputation has remained very poor. This was in part because it platformed anti-vaccination views and partly because the organization co-founded the MSSNG project, which extracted DNA data from tens of thousands of autistic children to put in a database shared by companies seeking to create a pre-natal test for autism, which activists see as a eugenics initiative.[10] (See section 5 of this book.) Others were also critical of the charity for not including or listening to the voices of autistic people. The group’s associations with the Judge Rotenberg Center, which has been sanctioned by the US government for using shock torture on developmentally disabled residents at its facility, also figured in.[11]
Shifting its position
Following pressure from within the organization and the public, Autism Speaks did a 180, first walking back its relationship with vaccine skepticism in 2014, issuing a statement summarising research that vaccines do not cause autism. The group also linked to a study de-bunking the autism-vaccine theory. The post made clear that while a number of adverse events can happen after vaccination, autism is not one of them. Then in 2015, on the heels of a measles outbreak, Autism Speaks chief science officer Rob Ring released a statement encouraging parents to vaccinate their children.
“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated.”
Five years after Singer’s departure from the board about the issue, Autism Speaks cut its formal ties with Katie Wright in 2015. A few months later, co-founder Bob Wright (who continued to speak critically about vaccines), stepped down as chairman. Autism Speaks changed its mission statement in 2016 to remove the word cure and broke ties with its sister organization Cure Autism Now, a group focused on “biomedical treatments… prevention, and a cure for autism.
But if Autism Speaks thought it could close the book on the vaccine-autism myth, it was wrong. While Autism Speaks had finally stopped platforming the antivaccine movement, new organizations such as Generation Rescue and Autism One had made a home for themselves on social media and in mainstream media. By the time Autism Speaks reversed itself, the myth of a vaccine link had already scaffolded entire industries of grift.
Continue to Part 3
Read Part 1
[1] Cited in Pitney, 48.
[2] Cited in Pitney, 54.
[3] See chapter 4 for a historical description of the ABA industry’s portrayals of autistic children in the last 60 years of autism therapy.
[4] It’s easy to see how childhood vaccines came to be falsely blamed for a regression: often the signs of autism appear around 18 months, correlating with the peak of childhood vaccinations. Of course, correlation does not equal causation. But that dry fact--whether printed on a placard or shared in a comments section-- does little to persuade a desperate parent who is seeking not only answers, but a media representation of their child as a main character and not a foil. Both Autism Speaks and McCarthy were able to affirm to parents that it wasn’t their fault, and that vaccines were to blame. Later, the off-label chelation gave them false hope, too.
[5] For more on this, please see Chapter 1.
[6] For more about Marcus and his funding of research into stem cells as an autism treatment, see Chapter 3.
[7] Trump held these views for years, as evidenced by a Tweet from March 28, 2014: “Healthy young child goes to the doctor, gets pumped with massive shots of many vaccines, doesn’t feel good and changes—AUTISM. Many such cases.”
[8] Hotez, writing in 2018, points to outbreaks in 2017 in the UK, US states such as Texas, California and Minnesota, Italy and Romania as a few examples (Hotez, 83)
[10] In 2014, the Autistic Self Advocacy Network broke the boycott and consulted on a project that Autism Speaks was also consulting on: Julia, the autistic character on Sesame Street. However, ASAN then broke all ties with the Sesame Street project when the Julia character was used in an Autism Speaks-led public service campaign, with ASAN stating that the project portrayed autism as “as a terrible disease from which their child can ‘get better.’”
[11] As of 2023, Autism Speaks has not disavowed the practices of the JRC and the organization’s 2019 national march event featured the JRC at its Family Resource Fair.