I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
For years, the National Institutes of Health has funded research on health inequities faced by racial, gender and other underserved communities. But one notable group was left out: people with disabilities.
Now, in a major victory for disability health advocates, the NIH announcedtoday that it has designated people with disabilities as a “health disparity population.”
The term, which is used to describe a disadvantaged group that experiences preventable differences in health, dramatically expands access to funding and resources for studying and helping disabled populations. The NIH is the largest single public funder of biomedical research in the world.
Disability advocates say the change reflects an ongoing shift in medicine from trying to “fix” or cure disabled people toward viewing them more holistically, as a demographic group with its own unique socioeconomic challenges.
“This is a big deal,” said Peter W. Thomas, co-coordinator of the Disability and Rehabilitation Research Coalition, which focuses on improving disability research. “This is going to focus more attention on getting people with disabilities the care they need and hopefully result in better outcomes for people with disabilities across the board.”
Earlier this month, the National Advisory Council on Minority Health and Health Disparities recommended against the move, citing concerns over the lack of a standardized definition for disability and the broad nature of the disability population which they said could overwhelm existing staff and budgeting at the NIH. However, there was immediatepushback from hundreds of disability organizations, advocates, researchers and health-care professionals and the council did not include that recommendation in their final report, which did not take a position on a designation.
A recent study by Rutgers University’s Annabelle Mournet and colleagues concluded that autistic people may be even more powerfully motivated to seek out friendships and community than nonautistic people. These desires are often frustrated by widespread misconceptions about autism, particularly the assumption that people on the spectrum aren’t interested in seeking comfort and support in the company of others. “Autistic adults cannot be assumed to have fewer social connections—or less desire to have social connections,” Mournet wrote in Spectrum. “Our field must work to dismantle these damaging and inaccurate notions.” Dismantling these false notions matters urgently, Mournet points out, because autistic adults are at high risk for suicide, and having a network of supportive connections protects against suicidal ideation.
The tendency of neurotypicals to stigmatize autistic behavior as weird and off-putting also hampers the formation of relationships. This process unfolds subconsciously—even in the first few seconds of interaction, observes Noah Sasson, a psychology professor at the University of Texas at Dallas whose work is deeply informed by the insights of autistic colleagues like Monique Botha. By conducting a study of neurotypicals’ first impressions of autistic people (known in psychology as “thin-slice judgments”), Sasson and his colleagues determined that negative reactions to autistic adults’ atypical body language, facial expressions, tone of voice and frequency of eye contact lead neurotypicals to be less inclined to pursue further interactions. These thin-slice judgments pervasively harm autistic adults’ attempts to find employment, build networks of support and navigate the social landscape in ways that lead to happy, secure and successful lives.
The Covid-19 pandemic has produced a remarkable financial windfall for anti-vaccine nonprofits. Revenue more than doubled for the Informed Consent Action Network and Robert F. Kennedy Jr.’s Children’s Health Defense in 2021 compared to the year prior, according to a POLITICO analysis of tax filings. The nonprofits that survived on operating budgets of around a few million dollars just a few years prior are now raking in more than $10 million each.
The group’s founder, Del Bigtree, hosts a podcast, The HighWire, where he discusses the group’s work. During the pandemic, the show released near-daily episodes, where Bigtree criticized lockdowns and masks, touted unproven treatments such as the malaria drug hydroxychloroquine and questioned the efficacy of COVID-19 vaccines.
Bigtree told POLITICO that his audience grew over the pandemic, from thousands of weekly listeners to millions. “The pandemic in many ways played right into our conversation,” he said.
The growth came despite major distribution platforms such as Facebook and YouTube removing The Highwire, citing misinformation policies.
It also brought in a rush of grassroots giving. Bigtree said smaller, recurring donors now account for a large share of the group’s funding. Most of the donations to the Informed Consent Action Network documented in tax documents are through donor-advised funds, a setup often used by wealthy benefactors to keep their identities private.
The group was not alone in its pandemic-era growth. A longtime anti-vaccine group Children’s Health Defense, the nonprofit launched in 2011 under the name World Mercury Project, also saw its revenue balloon. The group, which is led by longshot Democratic presidential candidate Kennedy, saw its revenue go from just over $1 million in 2018 to more than $15 million in 2021, according to the nonprofit’s federal tax filings.
The POLITICO | Morning Consult survey is a current snapshot of public opinion on vaccines. Other polls demonstrate the breadth of the movement among self-identified Republicans. In 2016, according to Pew Research Center’s polling, 82 percent of Americans — including 83 percent of Democrats and 79 percent of Republicans — said public-school students should be required to be vaccinated against measles, mumps and rubella.
But earlier this year, Pew’s polling showed the overall number who thought the measles, mumps and rubella vaccine should be mandatory had dropped to 70 percent, with a large gap between the parties. Democrats held roughly steady over the seven-year period, at 85 percent. But the share of Republicans who thought the vaccine should be mandatory slid sharply, to 57 percent.
In the POLITICO | Morning Consult poll, respondents were similarly asked whether common childhood vaccines should be required to attend public school — but were offered a third option about whether exemptions should be offered for health and religious reasons. A slight majority of voters, 53 percent, said the measles, mumps and rubella vaccine should always be required, including 65 percent of Democrats, 47 percent of Republicans and 46 percent of independents.
The increased doubts about vaccines among Republican voters come as party leaders flirt with unproven or discredited claims about the shots’ safety. From former President Donald Trump’s unfounded suggestions during the 2016 campaign that childhood vaccines could cause autism, to Ron DeSantis’ administration this month discouraging Floridians under the age of 65 from getting a Covid booster, political leaders in the GOP have tried to tap into the anti-vaccine elements of the party.
...
In fact, the Republican voters who are most uneasy about vaccines are more likely to vote for Trump than other candidates, despite his role in developing the Covid shot. A third of Trump-supporting Republicans (34 percent) said vaccines in general are unsafe for children under 18. That’s double the share of Republicans supporting one of his opponents in the primary, only 17 percent, who said most vaccines aren’t safe for kids.
Since its introduction, aspartame—the leading sweetener in U.S. diet sodas (DS)—has been reported to cause neurological problems in some users. In prospective studies, the offspring of mothers who consumed diet sodas/beverages (DSB) daily during pregnancy experienced increased health problems. We hypothesized that gestational/early-life exposure to ≥1 DS/day (DSearly) or equivalent aspartame (ASPearly: ≥177 mg/day) increases autism risk. The case-control Autism Tooth Fairy Study obtained retrospective dietary recalls for DSB and aspartame consumption during pregnancy/breastfeeding from the mothers of 235 offspring with autism spectrum disorder (ASD: cases) and 121 neurotypically developing offspring (controls). The exposure odds ratios (ORs) for DSearly and ASPearly were computed for autism, ASD, and the non-regressive conditions of each. Among males, the DSearly odds were tripled for autism (OR = 3.1; 95% CI: 1.02, 9.7) and non-regressive autism (OR = 3.5; 95% CI: 1.1, 11.1); the ASPearly odds were even higher: OR = 3.4 (95% CI: 1.1, 10.4) and 3.7 (95% CI: 1.2, 11.8), respectively (p < 0.05 for each). The ORs for non-regressive ASD in males were almost tripled but were not statistically significant: DSearly OR = 2.7 (95% CI: 0.9, 8.4); ASPearly OR = 2.9 (95% CI: 0.9, 8.8). No statistically significant associations were found in females. Our findings contribute to the growing literature raising concerns about potential offspring harm from maternal DSB/aspartame intake in pregnancy.
The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.
The latest example of largely-unheraled bipartisan work.
U.S. Rep. Marc Molinaro (R-NY-19) today announced the Think DIFFERENTLY About Education Act was voted out of the House Committee on Education & Workforce and will advance to the House Floor. Rep. Molinaro introduced this bipartisan bill alongside U.S. Reps. Tony Cárdenas (D-CA-29), Anthony D’Esposito (R-NY-04), and Mike Lawler (R-NY-17). This bill builds on Rep. Molinaro’s ‘ThinkDIFFERENTLY’ initiative to provide resources to individuals with disabilities and their families.
In an annual IEP meeting, school staff and parents of a child with a disability meet to develop an educational plan for the student. Under the Individuals with Disabilities Education Act, parents have the right to bring a third-party advocate, such as a therapist, lawyer, or knowledgeable family member, to these meetings. However, most parents are not aware of this right. The Think DIFFERENTLY About Education Act requires K-12 schools to inform parents of their right to bring an advocate to individualized education program (IEP) meetings.
...
Denise Marshall, CEO of The Council of Parent Attorneys and Advocates said, "The Council of Parent Attorneys and Advocates (COPAA) thanks Representative Molinaro for his leadership on behalf of students with disabilities through introduction and mark-up of The Think Differently About Education Act. This bill would require districts to inform parents of their existing right to bring any individual into a child's Individualized Education Program (IEP) meeting where key decisions are made that impact the child's education. We look forward to continuing to work with Rep. Molinaro in promoting and protecting the rights of children with disabilities."
Joe Salant, who grew up in an affluent New Jersey family, became a born-again Christian after coming out of drug rehab when he was in his early twenties, having spent six months in jail for drug possession. Recently, he has become part of the American Renewal Project, which aims to have a pastor from “every church in America” run for elected office by 2024. Salant preaches a Christian nationalist ideology that positions the church at the heart of all aspects of American society.
In his spare time he continues to release rap records with titles like “Human Sacrifices” and “Dies in Vain,” in which he raps about child trafficking.
In recent months he’s taken on a new role as the U.S representative for a company called Safrax, which markets chlorine dioxide tablets that are advertised on the company’s website as industrial products for odor removal, disinfection, and as cleaners for hot tubs and jacuzzis.
...
A message on the Safrax website informs customers that there is a 2-4 week delay in sending out orders specifically due to overwhelming demand for the product as a result of the tablets being featured on the radio show of pseudoscience conspiracist Mike Adams.
Along with 174 organizations and individuals, DREDFjoined a letter to protest a recent decision by an Advisory Committee of the National Institutes on Minority Health and Health Disparities (NIMHD) to not recognize people with disabilities as a health disparity population across the National Institutes of Health (NIH). Such recognition would allow NIH funding to go toward projects that explicitly include a focus on disability health disparities. It would also incentivize efforts to recruit researchers with disabilities and people with disabilities as participants in clinical research. Instead, NIMHD adopted a Working Group’s recommendation to develop and fund an “Office of Disability Research” to identify and work on what the Working Group saw as research “gaps.” The Working Group members were appointed by NIMHD, and did not include any person who openly identified as a person with disabilities. As a result of this decision, the disability community will continue to be denied the tangible benefits and tools that would help end longstanding and preventable barriers, stigma, and bias that deny optimal health to individuals with disabilities.
NIMHD’s given reasoning for its rejection, released barely a week before the proposed Section 504 rule was made public, is based on ableist assumptions about disability that are apparent in both the September 1, 2023 Working Group’s presentation and NIMHD’s discussion following the presentation (approximately l20 minutes beginning at the 3:57 hour mark). The Working Group seemed stymied by the reality that disability arises from different causes, and can medically manifest in different ways, occur at different times, and progress at different rates.
The lack of a single widely accepted definition of disability was seen as a “key gap” because NIMHD could not identify beforehand who would be affected by designating people with disabilities as a health disparity population. The Working Group also defined health disparities as “preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health . . .”, and then stated that “not all health differences in individuals with disabilities meet the criteria of a health disparity.” The Working Group insists on an “all or nothing” approach, which apparently requires all health differences between disabled persons and non-disabled persons to be a preventable difference. This problematic application of the definition of health disparity shows NIMHD’s bias toward separating those who have a disability or chronic condition from those who experience health disparities.
One of the most powerful lessons of Section 504, and a fundamental motivation for the development of a modern cross-disability rights movement in the 70s, was the understanding that the presence of disability invoked a common discriminatory response and could therefore be fought using common legal tools and advocacy. This lesson was patently lost on NIMHD and the Working Group, which seemed unable to recognize that multiple common factors keep people with disabilities from getting equitable and effective healthcare. For the NIMHD, the well-documented impact of healthcare barriers, bias, and discrimination was lost in the specifics of individual diagnoses and medical definitions.
In the end, the Working Group concluded that there were more than twice as many risks as benefits arising from designating people with disabilities as a health disparity population. They called attention to a “high potential for mission creep and loss of focus at NIMHD” because its limited budget and staff could be overwhelmed by funding applications from such a “broad and heterogeneous population.” The Working Group decided to recommend that NIMHD establish a separate Office or Institute focused on disability research that would have a distinct budget.
This recommendation, which was accepted by the NIMHD Advisory Committee, essentially calls for segregated disability health and healthcare disparities research. Lip service was given to the need for “a greater emphasis on the intersection of disabilities and existing populations with health disparities, but it is completely unclear who would lead an intersectional effort or how research efforts would be coordinated among NIMHD and a newly created office. The Advisory Committee’s decision also fails to specify why the Working Group’s recommendations for forming a separate Office of Disability Research could not be carried out after people with disabilities receive designation as a health disparity population.
Even as we recognize Secretary Becerra and his team for getting so much right about the proposed update to the Department of Health and Human Services (HHS) Section 504 rule, we call on the Secretary to further reaffirm the principles of nondiscrimination, full inclusion of people with disabilities, and commitment to health equity by recognizing people with disabilities as a health disparity population.
A daylong hearing by a Republican panel of South Carolina state legislators about pandemic preparedness saw a parade of witnesses trumpet proven falsehoods about the COVID-19 vaccine while raising doubts about the long-refuted link between childhood vaccines and autism.
...
The most lengthy testimony given Sept. 12 came from New York attorney Aaron Siri, who spoke for nearly 90 minutes. Siri criticized federal liability shield laws covering vaccine makers and raised doubts about the refuted link between autism and the pre-natal TDAP vaccine.
The most spurious accusations about vaccines came from Aaron Siri, an attorney who is most well known for his work with an organization called the Informed Consent Action Network, or ICAN. In his testimony, Siri mischaracterized vaccine research by leaving out key information about vaccine efficacy and safety.
“Vaccines were not given by God at Sinai, they’re just products,” Siri said during his testimony.
Siri tried to connect vaccines to autism by claiming that there were no studies conducted by federal health authorities that had fully refuted the claim that vaccines given in the first 6 months of life were not causing autism. But that ignores the ample research done by others into the supposed links between vaccines and autism more broadly: Multiplestudieshave found no connection between vaccines and autism. And a 2013 study published in The Journal of Pediatrics concluded that there was no link between autism and the vaccines given to children in the first two years of life.
The initial report that started the controversy around vaccines and autism was retracted and has been widely debunked in the 25 years since it was published.
Siri also said that the inactivated polio vaccine “does not in any way stop the infection and transmission of the virus.” He did not mention that the vaccine prevents the paralysis that polio causes, or that widespread adoption of the vaccine worked so well that polio was eliminated in the Americas by 1994, in 36 Western Pacific countries in 2000 and in Europe by 2002. India was declared polio-free in 2014.
ICAN has been on the frontlines of anti-vaccine misinformation and is led by Del Bigtree, a television and film producer who has become an anti-vaccine activist. ICAN was listed as one of the “key organisations” tied to the Center for Countering Digital Hate’s “The Disinformation Dozen”,” the anti-vaxxers who play leading roles in spreading digital misinformation about COVID vaccines.
Online misinformation promotes distrust in science, undermines public health, and may drive civil unrest. During the coronavirus disease 2019 pandemic, Facebook—the world’s largest social media company—began to remove vaccine misinformation as a matter of policy. We evaluated the efficacy of these policies using a comparative interrupted time-series design. We found that Facebook removed some antivaccine content, but we did not observe decreases in overall engagement with antivaccine content. Provaccine content was also removed, and antivaccine content became more misinformative, more politically polarized, and more likely to be seen in users’ newsfeeds. We explain these findings as a consequence of Facebook’s system architecture, which provides substantial flexibility to motivated users who wish to disseminate misinformation through multiple channels. Facebook’s architecture may therefore afford antivaccine content producers several means to circumvent the intent of misinformation removal policies.
From the article:
Our findings suggest that Facebook’s policies may have reduced the number of posts in antivaccine venues but did not induce a sustained reduction in engagement with antivaccine content. Misinformation proportions both on and off the platform appear to have increased. Furthermore, it appears that antivaccine page administrators especially focused on promoting content that outpaced updates to Facebook’s moderation policies: The largest increases appear to have been associated with topics falsely attributing severe vaccine adverse events and deaths to COVID-19 vaccines. Since engagement levels with antivaccine page content did not differ significantly from prepolicy trends, this potentially reflects vaccine-hesitant users’ desire for more information regarding a novel vaccine at a time when specific false claims had not yet been explicitly debunked. This underscores a need to account for, and address, the forces driving users’ engagement with—i.e., demand for—misinformative content.
Within the Chicago Public Schools district, almost half of the schools reported measles vaccination rates below 95% for the past school year, according to data from the Illinois State Board of Education. That mark is an important one, as measles, an extremely contagious disease with devastating consequences, requires about 19 of 20 people to be vaccinated to prevent its spread via herd immunity.
...
In Illinois, vaccine exemptions are allowed for religious or medical reasons.
Religious authorities in Christianity, Judaism and Islam broadly support vaccination, though the endorsement is not universal. Despite this, the highest rates of students unvaccinated for measles and other diseases in the state can be found at some religious schools.
The Muhammad University of Islam, a Nation of Islam affiliated school in the South Shore community area, reported 8% of its student body as vaccinated against measles last school year, according to ISBE data. In the 2017/2018 school year, the entire student body claimed a religious exemption for the measles vaccine. These exemptions were common for most required shots last school year.
The school is located about a mile from Paul Revere, the CPS elementary with the lowest measles vaccination rate in the past academic year.
The Final Call, published by the Nation of Islam, cites research by discredited individuals including Joseph Mercola, Robert Kennedy Jr. and Rizza Islam. These three were part of the “Disinformation Dozen,” spreading most of the false information about the COVID-19 vaccine, according to research by the Center for Countering Digital Hate.
Nation of Islam leader Louis Farrakhan also published campaigns against the COVID-19 vaccine.
Distrust in these communities is often buttressed by the fraudulent research of Andrew Wakefield, whose 1998 study falsely connected the MMR vaccine to autism, experts said. Despite being retracted following its publication, the damage from his work continues.
In June, two librarians put up two rainbow-colored displays near the entrance of the public library in Sterling, Kan. — their way of celebrating autism and neurodiversity, according to a recently filed lawsuit.
In one, the rainbow colors formed an infinity symbol broken up only by a heart and accompanied by the words “We all think differently.” The other was a rainbow scarf adorned with the silhouette of a child in a wheelchair reaching out to the words “In diversity is beauty and strength.”
The librarians say they were fired after a library board member complained the display promoted an “LGBTQ agenda.”
On Tuesday, the two former librarians filed a lawsuit alleging that the Sterling Free Public Library’s eight-member board, the city of Sterling and its mayor violated their rights to free speech. In a 30-page complaint filed in the U.S. District Court for Kansas, Kari Wheeler and Brandy Lancaster accused one of the board members, Michelle Miller, of waging an illegal campaign to censor their pro-autism displays because she mistakenly thought they were promoting “LGBTQ agendas.”
The lawsuit argues that Sterling library patrons "are entitled to a library that embraces a range of viewpoints, not just the viewpoints of those with an aversion to rainbow colors and a disdain for LGBTQ citizens."
The federal lawsuit filed Tuesday in U.S. District Court in Kansas City accuses the library and city leaders of retaliation against the expression of First Amendment rights, viewpoint discrimination, violating due process rights, equal protection violations and violating the Kansas Open Records Act.
