The Need for Research Beyond the West

In The Politics of Autism, I discuss international perspectives. I also discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Petrus de Vries at The Transmitter:

Almost everything we know about autism comes from a handful of WEIRD (Western, educated, industrialized, rich and democratic) countries in the so-called “global north,” yet most autistic people live in low- and middle-income countries (LMICs) around the globe that are quite different from these predominantly English-speaking nations. In a review conducted in 2017, my colleagues and I discovered that less than 1 percent of all autism research to date was performed in Africa, a continent that is predicted by UNICEF to be the home of more than 40 percent of the world’s children by 2050. At the service level, the majority of people in LMICs receive no diagnoses or supports, and in the few—typically urban—areas that can offer services, families often have to pay out of their own pocket. Finding strategies to meet the needs of autistic people and their families in LMICs is therefore fast approaching critical levels.

Scientists have made some progress toward diversifying autism research in high-income countries, by setting up initiatives to increase the diversity, equity and inclusion of the researchers, organizations and communities involved. My colleagues and I acknowledge those efforts. But unless autism research becomes diverse and global at the same time, we will retain the “knowledge gap” between the high-income/English-speaking nations and the rest of the world.

The International Society for Autism Research (INSAR) annual meeting begins tomorrow in Melbourne, Australia. Having this meeting in Australia, rather than in the U.S. or Europe as has previously been the case, is a values-based action intended to make it easier for researchers, clinicians and advocates from the Western Pacific Region to participate. The program deliberately includes panels and special-interest groups on the perspectives and needs of Indigenous, minority and other marginalized groups across the Western Pacific Region. Discussions are also slated to include the research priorities of diverse communities across the globe.

Antivaxxers Push Infertility Myths

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.   And among those diseases could be COVID-19.

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

The anti-vax movement has a great deal of overlap with MAGA, QAnon, and old-school conspiracy theory.  

Some kooks link vaccination to "The Great Replacement" theory, suggesting that they are part of a plot to reduce white populations.

Tara C. Smith and David H. Gorski have an article at Vaccine titled "Infertility: A common target of antivaccine misinformation campaigns." 

Abstract:

Misinformation, disinformation, and conspiracy theories about vaccines are key drivers of vaccine hesitancy. A repeated false claim about COVID-19 vaccines is that the vaccines cause female infertility. Dating back decades, various conspiracy theories have linked vaccination programs with infertility and thus harmed vaccination programs in Africa, Asia, and Central America, particularly against polio and tetanus. In the United States, Europe, and Australia, human papilloma virus (HPV) vaccines have been falsely blamed for infertility and primary ovarian insufficiency (POI). After distribution of COVID-19 vaccines began in December 2020, almost immediately there arose conspiracy theories claiming that these vaccines cause menstrual irregularities, miscarriages, and infertility, promoted by noted antivaccine activists Robert F. Kennedy, Jr. and Andrew Wakefield among others. Here we will explore the history of this antivaccine narrative, how it has been promulgated in the past and repurposed to COVID-19 vaccines, and strategies to counter it.

From the article:

In 2022, RFK Jr.’s antivaccine group Children’s Health Defense released a documentary entitled “Infertility: A Diabolical Agenda” [52], with Kennedy serving as executive producer. Co-producers included Mary Holland, a lawyer who has long promoted the false claims that vaccines cause autism and that HPV vaccines cause infertility, and Andrew Wakefield, the UK physician who has been one of the most famous antivaccine activists in the world since he published his now-retracted case series in The Lancet in 1998 that claimed to find an association between the MMR vaccine and autistic enterocolitis, arguably the main spark behind the late 20th century resurgence of antivaccine sentiment. Infertility has been characterized as a “docuganda”; i.e., a documentary propaganda [53], a genre which includes prior anti-vaccine films “The Greater Good” and Andrew Wakefield’s previous directorial effort, the 2016 film “VAXXED: From Cover-Up to Catastrophe”.

Infertility: A Diabolical Agenda is is largely an updated rehash of a 1990s-era disinformation campaign that spread fear about a push to prevent neonatal tetanus in developing countries by vaccinating young women, and one of the earliest antivaccine campaigns to use the Internet as a powerful tool to spread such fear. As part of this fear-based campaign, antivaccine advocates conflated ongoing clinical trials of an experimental antifertility vaccine, which conjugated a subunit of human chorionic gonadotrophin (hCG) hormone with diphtheria or tetanus toxoid proteins, to ongoing tetanus immunization programs led by the World Health Organization [54]. Though there was no connection between the immunization program and the clinical trial, the confusion between the two led to distrust of the tetanus vaccines. Once such distrust spread, tetanus vaccines were tested for the presence of hCG. However, ordinary pregnancy tests were used, which were not appropriate to test for this hormone within vaccine vials, leading to false positive results and further misrepresentation of the outcome by groups opposed to the tetanus vaccine campaign. Vaccines tested by reputable laboratories did not find presence of the hormone [54].

52. A. Wakefield
Infertility: A Diabolical Agenda
Children’s Health Defense Films, United States (2022)
Google Scholar

53. Jarry J. Infertility: A Diabolical Agenda Is Anti-Vaxx Sleight-of-Hand Propaganda (2022). McGill University Office for Science and Society. Accessed at https://www.mcgill.ca/oss/article/covid-19-critical-thinking-pseudoscience/infertility-diabolical-agenda-anti-vaxx-sleight-hand-propaganda on November 14, 2023.
Google Scholar

54. J. Milstien, P.D. Griffin, J.-W. Lee
Damage to Immunization Programmes from Misinformation on Contraceptive Vaccines
Reprod Health Matters, 6 (1995), pp. 24-28

 http://www.autismpolicyblog.com/2024/01/antivaxxers-push-infertility-myths.html

 

Death by Measles

 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.

 Ben Farmer at The Telegraph:

A measles outbreak in Zimbabwe has now killed nearly 700 children, in a rapidly accelerating and “deeply concerning” flare-up of the highly contagious disease.

Health officials told the Telegraph they were alarmed by both the speed of the spread and the high fatality rate of the outbreak, which has seen the recent death toll jump by dozens each day.

The flare-up of one of the world’s most infectious diseases has taken hold among church congregations that have rejected vaccinations for religious reasons.

Deaths had reached 698 by September 4, according to the nation’s health ministry, up from less than a quarter of that a fortnight earlier. Officials reported that 37 children died on September 1 alone.

The outbreak is thought to be the worst for some time in the southern African nation of 15 million. The last outbreak 11 years ago was far less severe, health sources told the Telegraph.

Unicef said that in the worst affected eastern province of Manicaland, nearly one-in-10 of those getting the disease were dying. That rate is higher than in other recent African outbreaks.
...

The country’s Apostolic churches or sects are thought to be followed by around one-in-five of the population. Their teachings regularly include a potent mix of opposition towards Western medicine and belief in faith healing and prayer, meaning the congregations have become a stronghold of anti-vaccination sentiment.

MMS Redux

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

Ed Pilkington at The Guardian:

The leader of the most prominent group in the US peddling potentially lethal industrial bleach as a “miracle cure” for coronavirus wrote to Donald Trump at the White House this week.

In his letter, Mark Grenon told Trump that chlorine dioxide – a powerful bleach used in industrial processes such as textile manufacturing that can have fatal side-effects when drunk – is “a wonderful detox that can kill 99% of the pathogens in the body”. He added that it “can rid the body of Covid-19”.

A few days after Grenon dispatched his letter, Trump went on national TV at his daily coronavirus briefing at the White House on Thursday and promoted the idea that disinfectant could be used as a treatment for the virus. To the astonishment of medical experts, the US president said that disinfectant “knocks it out in a minute. One minute!”

He went on to say: “Is there a way we can do something, by an injection inside or almost a cleaning? Because you see it gets in the lungs and it does a tremendous number on the lungs, so it’d be interesting to check that.”

Trump did not specify where the idea of using disinfectant as a possible remedy for Covid-19 came from, and the source for his notion remains obscure. But the Guardian has learned that peddlers of chlorine dioxide – industrial bleach – have been making direct approaches to the White House in recent days.

Grenon styles himself as “archbishop” of Genesis II – a Florida-based outfit that claims to be a church but which in fact is the largest producer and distributor of chlorine dioxide bleach as a “miracle cure” in the US. He brands the chemical as MMS, “miracle mineral solution”, and claims fraudulently that it can cure 99% of all illnesses including cancer, malaria, HIV/Aids as well as autism.

Since the start of the pandemic, Genesis II has been marketing MMS as a cure to coronavirus. It advises users, including children, to mix three to six drops of bleach in water and drink it.

In his weekly televised radio show, posted online on Sunday, Grenon read out the letter he wrote to Trump. He said it began: “Dear Mr President, I am praying you read this letter and intervene.”

Presidential words have consequences.  Philip Obaji, Jr. at The Daily Beast:

Just hours after U.S. President Donald Trump suggested research into whether coronavirus might be treated by injecting disinfectant into the body, viral messaging about drinking such liquids or taking them intravenously began to spread across Nigeria on WhatsApp.

One typical message seen by The Daily Beast claims falsely that the U.S. government has “approved the use of disinfectants with high alcohol content and anti-microbial properties to treat patients with coronavirus.” Another WhatsApp message broadcast far and wide in this most populous African nation says disinfectants “work instantly” and Trump "has given the go ahead" for them to be used in COVID-19 treatment.

Data on Developmental Disabilities Around the World

Uncertainty is a major theme of The Politics of Autism.  How common is autism?  Do rates vary around the world?  Has prevalence changed over time.  There are now efforts to address such questions.

The Lancet has an article titled "Developmental disabilities among children younger than

5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016.  The summary:

Background

The Sustainable Development Goals (SDGs) mandate systematic monitoring of the health and wellbeing of all children to achieve optimal early childhood development. However, global epidemiological data on children with developmental disabilities are scarce. The Global Burden of Diseases, Injuries, and Risk Factors Study 2016 provides a comprehensive assessment of prevalence and years lived with disability (YLDs) for development disabilities among children younger than 5 years in 195 countries and territories from 1990 to 2016. Methods We estimated prevalence and YLDs for epilepsy, intellectual disability, hearing loss, vision loss, autism spectrum disorder, and attention deficit hyperactivity disorder. YLDs were estimated as the product of the prevalence estimate and the disability weight for each mutually exclusive disorder, corrected for comorbidity. We used DisMod-MR 2.1, a Bayesian meta-regression tool, on a pool of primary data derived from systematic reviews of the literature, health surveys, hospital and claims databases, cohort studies, and disease-specific registries.

Findings

Globally, 52·9 million (95% uncertainty interval [UI] 48·7–57·3; or 8·4% [7·7–9·1]) children younger than 5 years (54% males) had developmental disabilities in 2016 compared with 53·0 million (49·0–57·1; or 8·9% [8·2–9·5]) in 1990. About 95% of these children lived in low-income and middle-income countries. YLDs among these children increased from 3·8 million (95% UI 2·8–4·9) in 1990 to 3·9 million (2·9–5·2) in 2016. These disabilities accounted for 13·3% of the 29·3 million YLDs for all health conditions among children younger than 5 years in 2016. Vision loss was the most prevalent disability, followed by hearing loss, intellectual disability, and autism spectrum disorder. However, intellectual disability was the largest contributor to YLDs in both 1990 and 2016. Although the prevalence of developmental disabilities among children younger than 5 years decreased in all countries (except for North America) between 1990 and 2016, the number of children with developmental disabilities increased significantly in sub-Saharan Africa (71·3%) and in North Africa and the Middle East (7·6%). South Asia had the highest prevalence of children with developmental disabilities in 2016 and North America had the lowest.

Interpretation

The global burden of developmental disabilities has not significantly improved since 1990, suggesting inadequate global attention on the developmental potential of children who survived childhood as a result of child survival programmes, particularly in sub-Saharan Africa and south Asia. The SDGs provide a framework for policy and action to address the needs of children with or at risk of developmental disabilities, particularly in resource-poor countries