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.
Antivaxxers are sometimes violent, often abusive, and always wrong.
In The Politics of Autism, I discuss the implementation of public policy toward autism at the federal, state, and local levels, involving education and social services. Implementation needs far more study.
Supporting use of evidence-based practice in public service programs for autistic individuals is critical. The California Autism Professional Training and Information Network (CAPTAIN) brings together best practices from intervention and implementation research to support scale up of autism services. The current study was designed to evaluate the impact of CAPTAIN on provider-level outcomes including attitude toward, knowledge, fidelity, and use of autism EBPs and overall classroom quality. Overall, results indicated variability across measures, with some significant differences between CAPTAIN-trained and non-CAPTAIN-trained providers. These preliminary findings show promise for the efficacy of the CAPTAIN model to increase dissemination and implementation of EBP at the classroom level.
From the article:
The use of research-based practices is mandated by IDEA and ESSA and has been linked to best outcomes for students with autism, which highlights effective implementation and scale up of EBPs in schools as a critical priority. The growing literature on factors that support the implementation process indicates key drivers which can be considered targets of implementation interventions to improve implementation outcomes. In this study, we explored implementation outcomes at the direct service provider level and evaluated differences between CAPTAIN-trained and non-CAPTAIN-trained providers using one of the first large-scale statewide examinations across multiple levels of the special education service system. Overall outcomes indicate CAPTAIN-trained providers and teachers report more favorable attitudes toward EBP, better implementation outcomes related to data collection, and use with students, higher knowledge of their primary EBP, and better ratings of learning environment. These findings show great promise for CAPTAIN as a model to support statewide scale up if EBP for autism and are discussed in more detail below
In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. One is a shortage of caregivers and direct support professionals, which is likely to get worse.
An editorial in The Pittsburgh Post-Gazette:
Sandi Shaffer lost her house because her daughter is disabled.
That sentence should make every politician in Pennsylvania sick. It represents a catastrophic failure of the commonwealth’s services for those with intellectual disabilities and autism (ID/A) — services it is bound by law, not to mention basic human dignity, to provide.
The catastrophe is ongoing, and worsening every day.
According to the state, there are about 58,000 people with ID/A currently receiving services from direct support professionals (DSPs) across Pennsylvania. Some of these people only require infrequent check-ins with their care providers, but others — about 12,000 — are getting intensive support in the day-to-day business of staying safe, clean and healthy.
But due to chronic underfunding, exacerbated by the coronavirus pandemic, 6,500 Pennsylvanians with ID/A have lost services in the past 18 months. And 12,000 are on a waiting list — an interminable queue from hell that seems, to families who are on it, like an elaborate and cruel joke.
Of those on that eternal list, 5,000 have an emergency need. But there are no DSPs to care for them.
That’s where Ms. Shaffer and her daughter, Kate, find themselves. Kate, who is non-verbal and requires 24/7 supervision, graduated from the Children’s Institute of Pittsburgh in 2017. She has been on a waiting list for a state-funded DSP for 16 years.
Ms. Shaffer lost her full-time job because she couldn’t be in two places — at work and with her daughter — at once. She couldn’t keep up on her mortgage. She now rents in Westmoreland County, holds down two part-time jobs, cobbles together care for Kate during the hours she can’t be present and cares for Kate when she is present — all while also caring for her elderly mother.
The last decade has witnessed the emergence of a powerful call from autistic people to have real input into the decisions that shape their lives. This participatory approach underpins discussions regarding autistic involvement with issues from social policy, human rights, justice and accessibility rights, through to meaningful and effective approaches to clinical, medical, therapeutic and educational practices. The heart of the message is, in part, about acceptance: embracing and valuing autism as part of the human spectrum. It is also about ensuring that meaningful change can be driven by those who have a true and deep understanding of the strengths and needs from their own experiential expertise.
The slogan that best captures this idea – ‘nothing about us without us’ – rings especially true within the world of research, with implications for both what research is done and how it is conducted. Autism researchers have responded across the world. There is a deepening recognition that having rigorous methodological design that is participatory in nature improves the outcomes of research (den Houting et al., 2021; Fletcher-Watson et al., 2019; Gillespie-Lynch et al., 2017; Nicolaidis et al., 2019; Pellicano, 2020; Pellicano et al., 2021). In addition, there is a growing appreciation that participation helps researchers to translate their ideas more effectively into recommendations for concrete change in clinical or educational practice or broader public policy (Adams et al., 2018; Benevides et al., 2020; Gillespie-Lynch et al., 2021; Leadbitter et al., 2021; Shattuck et al., 2018; Warner et al., 2019).
It is indisputable, therefore, that participatory research is gaining momentum among autism researchers. It remains, however, far from the dominant approach. In practice, much autism research continues to exclude autistic input except in the capacity of a research participant (Fletcher-Watson et al., 2019; Milton & Bracher, 2013; Milton et al., 2019) and those few studies that include autistic people in the decisions around research are all too often tokenistic in nature (den Houting et al., 2021). Indeed, as Milton (2019) argues, autistic people have traditionally been viewed as the subjects on which research is conducted rather than cast in the role of researcher.
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.
Antivaxxers are sometimes violent, often abusive, and always wrong.
She told state lawmakers that vaccines kill; she touted dubious COVID-19 treatments like ivermectin and hydroxychloroquine on talk radio; she stormed a Big Lots with a small and barefaced crowd to protest its mask requirement; and she pushed her local school board to rescind its mask requirement.
However, in November, with a $1000 financial boost from U.S. Senate Candidate Jane Timken’s “Jobs For a New Economy” (JANE) PAC, Laffay won a seat on the Huron City School District Board of Education.
Laffay’s election epitomizes a confluence of trends as the new coronavirus approaches its third year on earth: the explosion of anti-science and anti-vaccination fervor; conservatives’ new emphasis on school board races as masks and “critical race theory” animate their political base; and doctors using their credentials to spread health misinformation in the face of medical licensing boards that have refused to intercede.
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In an interview with Tom Roten, a conservative talk radio host, she said she has been prescribing ivermectin and hydroxychloroquine — both of which have been championed by conservatives as cures and preventatives for COVID-19 over objections from the medical community and the drug’s manufacturers who have pleaded against the practice — throughout the pandemic. She also recommended using mouthwash to “decrease any viral loads” that might be accumulating.
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Speaking to Roten, Laffay identified herself as a member of “America’s Frontline Doctors,” a network of health care providers who claim vaccines are unsafe and ineffective who have made millions selling consultations and alternative medications like ivermectin, which many pharmacies have refused to dispense. The network was founded by Dr. Simone Gold, who awaits trial on charges related to her allegedly joining an insurrection at the U.S. Capitol on Jan. 6, 2021.
Laffay runs a clinic called “Elite Wellness Group.” Its website lists services including “facial LED light therapy” ($95 per 30-minute session); “emotional freedom technique” ($115 per one-hour session); and “infrared sauna” ($48 per 30-minute session).
The ADA requires that physicians and/or clinical staff discuss accommodation needs with their patients with disability and collaborate in making reasonable accommodation decisions, emphasizing patients’ preferences. Yet many physicians are unclear about their responsibilities under the ADA.
Between late 2019 and early 2020, several colleagues and I surveyed more than 700 physicians with outpatient practices. Our results, published in the journal Health Affairs, showed that almost 36% of physicians reported knowing little or nothing about their legal responsibilities or obligations under the ADA when caring for patients with disability, while 50% said they had some knowledge. Seventy-one percent did not know who determines reasonable accommodations for patients with disability — that it requires collaboration between patients and physicians and/or clinical staff. Indeed, only 40% of physicians recognized that patients and/or their family should be involved.
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.
Antivaxxers are sometimes violent, often abusive, and always wrong.
Misinformation has been identified as a major contributor to various contentious contemporary events ranging from elections and referenda to the response to the COVID-19 pandemic. Not only can belief in misinformation lead to poor judgements and decision-making, it also exerts a lingering influence on people’s reasoning after it has been corrected — an effect known as the continued influence effect. In this Review, we describe the cognitive, social and affective factors that lead people to form or endorse misinformed views, and the psychological barriers to knowledge revision after misinformation has been corrected, including theories of continued influence. We discuss the effectiveness of both pre-emptive (‘prebunking’) and reactive (‘debunking’) interventions to reduce the effects of misinformation, as well as implications for information consumers and practitioners in various areas including journalism, public health, policymaking and education.From the article:
A tacit assumption of the information deficit model is that false beliefs can easily be corrected by providing relevant facts. However, misinformation can often continue to influence people’s thinking even after they receive a correction and accept it as true. This persistence is known as the continued influence effect (CIE)85,86,87,88.
In the typical CIE laboratory paradigm, participants are presented with a report of an event (for example, a fire) that contains a critical piece of information related to the event’s cause (‘the fire was probably caused by arson’). That information might be subsequently challenged by a correction, which can take the form of a retraction (a simple negation, such as ‘it is not true that arson caused the fire’) or a refutation (a more detailed correction that explains why the misinformation was false). When reasoning about the event later (for example, responding to questions such as ‘what should authorities do now?’), individuals often continue to rely on the critical information even after receiving — and being able to recall — a correction89. Variants of this paradigm have used false real-world claims or urban myths90,91,92. Corrected misinformation can also continue to influence the amount a person is willing to pay for a consumer product or their propensity to promote a social media post93,94,95. The CIE might be an influential factor in the persistence of beliefs that there is a link between vaccines and autism despite strong evidence discrediting this link96,97 or that weapons of mass destruction were found in Iraq in 2003 despite no supporting evidence98. The CIE has primarily been conceptualized as a cognitive effect, with social and affective underpinnings.
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Practitioners must be aware that simple retractions will be insufficient to mitigate the impact of misinformation, and that the effects of interventions tend to wear off over time92,145,152. If possible, practitioners must therefore be prepared to act repeatedly179. Creating engaging, fact-based narratives can provide a foundation for effective correction215,216. However, a narrative format is not a necessary ingredient140,217, and anecdotes and stories can also be misleading218.
[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”
From New Jersey Senate Democrats:
The Senate today approved bipartisan legislation that would foster greater understanding and communication between law enforcement and the communicative disabilities community by requiring the Motor Vehicle Commission to allow the holder of a driver’s license or non-driver identification card to indicate that the person has been diagnosed with an autism spectrum disorder or communication disorder.
The bill, sponsored by Senator Nellie Pou and Senator Kristen Corrado, would require the MVC to indicate the diagnosis by notating the information on the person’s driver’s license or non-driver identification card under the column designated for restrictions. The goal is to make it easier for the person with the disability to more easily communicate with any law enforcement officer they may encounter and hopefully serve to limit the chances that an ordinary interaction, such as a routine traffic stop, will escalate into a more fraught or even violent confrontation.
“Too often, in recent years, some interactions between law enforcement and individuals with communicative disabilities have led to negative outcomes, simply because of a communication barrier. This legislation is designed to be a preventative measure that will help improve that communication and minimize the chance of escalation or a negative incident,” said Senator Pou (D-Bergen/Passaic).
The legislation, S-849, is aimed at protecting members of the communications disability community and also to help law enforcement better understand and communicate with them.
The bill was approved by the Senate by a vote of 39-0.
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.
Antivaxxers are sometimes violent, often abusive, and always wrong.
Zachary Petrizzo at The Daily Beast:Anti-COVID-19 “Vaccine Police” leader Christopher Key has a new quarter-baked conspiracy theory for his anti-vax followers to use to cure themselves of COVID-19: Drink their own urine. “The antidote that we have seen now, and we have tons and tons of research, is urine therapy. OK, and I know to a lot of you this sounds crazy, but guys, God’s given us everything we need,” Key said in a video posted over the weekend on his Telegram account after being released from jail over a trespassing charge..
In The Politics of Autism, I write:
Many articles and blog posts arguing for the vaccine-autism link have the trappings of genuine academic research: tables, graphs, citations, and scientific jargon. Some of the authors have credentials such as M.D. or Ph.D. degrees. None of these things is a guarantee of scientific value, as the history of science is full of crackpot theories (e.g., AIDS denialism) that are the heavily-footnoted products of people with letters after their names. But most people will not be able to spot the scientific weaknesses of such work. Outside of academia, few understand concepts such as peer review. Jordynn Jack describes one dubious article that appeared in a non-peer-reviewed publication: “Regardless of the scientific validity of the article, though, the writers perform the writing style quite effectively. It would be difficult for the layperson to distinguish this article from any other scientific research paper, especially if one did not investigate the nature of the journal … or of the scientific response to the article.”
Besides [Dr. Simone] Gold, PolitiFact has fact-checked problematic claims by Florida osteopathic physician Dr. Anthony Mercola, Minnesota family physician Dr. Scott Jensen and Ohio osteopath Dr. Sherry Tenpenny, all of whom have become often-cited "experts" in anti-vaccination circles.
But the role physicians can play in promoting vaccine hesitancy predates COVID-19. In 19[9]8, Andrew Wakefield, a physician later stripped of his medical license, falsified research that wrongly claimed a link between the measles, mumps and rubella vaccine and autism. The paper, published in a prestigious medical journal that took years to retract it, fueled the kind of vaccine hesitancy that experts believe laid the groundwork for today’s anti-vaccine movement.
In addition to appearing with [Joe] Rogan, who has made and played host to several inaccurate claims about the COVID-19 vaccines, [Robert] Malone has given interviews to Fox News host Tucker Carlson, InfoWars reporter Kristi Leigh, and former Trump adviser Steve Bannon — all of whom have captured audiences while spreading misinformation about the vaccines.
The pandemic burdened the disability community even more severely. The U.S. Census Bureau’s COVID-19 Household Pulse Survey data from March 2021 revealed that 55.7 percent21 of disabled Medicare recipients under the age of 65 reported not having enough food or not having access to the foods they wanted. Additionally, the U.S. Department of Agriculture (USDA) calculated that, in 2020, disabled adults faced food insecurity at more than twice the rate22 of their nondisabled counterparts—with nonworking disabled adults three times more likely to be food insecure than nondisabled adults—due to the numerous adverse impacts of the pandemic. These additional challenges include concerns among disabled people who are at higher risk of COVID-19 complications about the increased risk of exposure that comes with shopping in person at the grocery store,23 as well as difficulties with food delivery programs such as financial strains and inconvenient delivery times.24
21.Carli Friedman, “Food insecurity of people with disabilities who were Medicare beneficiaries during the COVID-19 pandemic,” Disability and Health Journal 14 (4) (2021), available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8436149/.
22.US Department of Agriculture Economic Research Service, “Interactive Charts and Highlights,” available at https://www.ers.usda.gov/topics/food-nutrition-assistance/food-security-in-the-us/interactive-charts-and-highlights/#disability (last accessed November 2021).
23. Kendra Crighton, “Immunocompromised community call for more options to get groceries during COVID-19,” Nanaimo News Bulletin, April 6, 2020, available at https://www.nanaimobulletin.com/news/immunocompromised-community-call-for-more-options-to-get-groceries-during-covid-19/.
24. Melissa L. Caldwell, “Why people with disabilities are at greater risk of going hungry during the pandemic,” PBS News Hour, May 7, 2021, available at https://www.pbs.org/newshour/health/why-people-with-disabilities-are-at-greater-risk-of-going-hungry-during-the-pandemic.
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.
Antivaxxers are sometimes violent, often abusive, and always wrong.
A QAnon and anti-vaccine podcaster has died from complications due to COVID-19 after contracting the virus at a conspiracy theory conference that turned into a superspreader event, and where fellow attendees baselessly blamed their illness on an anthrax attack.
Doug Kuzma, 61, from Newport News, Virginia, died on January 3 after being hospitalized 10 days earlier. Kuzma broadcasted on the FROG News podcasting network, which stands for “Fully Rely On God.” Kuzma and his FROG fellow hosts pushed an array of conspiracy theories ranging from QAnon to COVID denial and election fraud lies.
Kuzma attended the ReAwaken America conference in Dallas on the weekend of Dec. 11, posting a picture of his media pass on his Facebook page. Other images Kuzma posted from the conference show large crowds in confined spaces without any social distancing or masks.
Kelly Ernby was no doubt a good person, a friend to her friends, a companion to her husband, a crime-fighting prosecutor. She presumably had all the decent qualities we usually celebrate after a person dies, when we generally say only the kindest things we can think of.
But she was also a vocal critic of vaccine mandates whose posts on social media risked lives, denied science and confused Americans. She was an activist with a mini-megaphone — an Orange County deputy district attorney, a local Republican Party official and a 2019 GOP candidate for state Assembly — spreading the message of a dangerous populist movement.
So when Ernby died of COVID-19 this week at age 46 (unvaccinated, of course), her death set off an ugly public debate, reflecting all the bitterness, polarization and frustration in American pandemic society. A resident of Huntington Beach, she suddenly became a symbol rather than a person, a blank slate onto which we could all project our harshest gut reactions.
There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had. Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”
Capitol insurrectionist Jacob Chansley -- the "QAnon Shaman" -- unsuccessfully used autism as a defense earlier this year.
Another insurrectionist has tried and failed with a similar argument.
[Devlyn] Thompson reached a plea agreement and pleaded guilty to one count of Assaulting, Resisting, or Impeding Certain Officers Using a Dangerous Weapon. He was sentenced to three years and 10 months in prison, followed by three years of supervised release.
Thompson wrote an apology letter to the officer he assaulted during the riots according to court proceedings. Prosecutors in court said Thompson was part of a mob in a Capitol entrance that attacked officers. Surveillance video captured Thompson at the Capitol. Prosecutors said he struck a police officer’s hand with a baton he found. Prior to that attack, Thompson and others took riot shields from officers and he threw a large speaker striking the head of another rioter, drawing blood, according to prosecutors. His defense attorneys argued for a lighter sentence stating Thompson is on the Autism spectrum. The judge issuing Thompson’s sentence stated that isn’t an excuse for the defendant’s actions and noted he had a job with a $90,000 a year salary before the riot.