Doctors' Knowledge of ADA

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

 Lisa I. Iezzoni at STAT:

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.

Continued Influence Effect and Vaccine 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.

Antivaxxers are sometimes violent, often abusive, and always wrong. 

Ullrich K. H. Ecke and colleagues have an article at Nature Reviews Psychology titled "The psychological drivers of misinformation belief and its resistance to correction."

The abstract:

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.

...

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.

ID in NJ

In The Politics of Autism, I write:

[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.

Urine as Quack COVID Treatment

 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.

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Credentialed Crackpots

  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.”

 Bill McCarthy at PolitiFact:

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.

Disabilities, COVID, and Food Insecurity

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is food insecurity.

From Mia Ives-Rublee and Christine Sloane at the Center for American Progress:

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.

COVID Keeps Claiming Antivaxxers

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 growing number of them are getting COVID.

David Gilbert at Vice:

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.

Nicholas Goldberg at LAT:

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.

 

Autism and the Insurrection

In The Politics of Autism, I write:

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.

Joe Henke at WXIA:

[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.

How to Improve Screening

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

A release from the Boston University School of Medicine:

Autism spectrum disorder (ASD) typically develops in children before age 3, but less than half of children are accurately diagnosed with ASD before age 4. Although pediatric advocates recommend that children at risk of ASD receive screening through early intervention (EI) services provided by states, the program often lacks effective screening tools to detect and diagnose this disorder.

Now, a new study led by a Boston University School of Public Health (BUSPH) researcher found that implementing a multi-stage screening protocol for ASD in early intervention services may lead to a 60 percent increase in ASD detection, compared to standard screening.

Published in the journal JAMA Pediatrics, the study also underscored the importance of monitoring for disparities in ASD. The increased rate of ASD detection was nearly twice as high for Spanish-speaking families as for non-Spanish-speaking families, helping to reduce a well-documented health disparity.

The study is the first comprehensive evaluation of ASD screening in EI settings and includes comparison with non-screened EI settings. Unlike standard approaches to screening, which are often limited to providing questionnaires for parents, the multi-component screening protocol in this study includes input from parents and EI providers in the decision-making process for a child’s ASD diagnosis, as well as training for EI providers and ongoing collaboration between the EI providers and the EI sites’ program directors and research assistants.

“When implemented with appropriate supports and access to diagnostic services, screening can really move the needle on the early detection of autism,” says Dr. Radley Chris Sheldrick, study lead author and research associate professor of health law, policy & management at BUSPH. “If implemented in a culturally sensitive way, it can also reduce health disparities in autism diagnoses, which have been well-documented in the literature.”

For the study, Dr. Sheldrick and colleagues analyzed administrative data that was collected by the Massachusetts Department of Public Health and included records for 33,326 children aged 14 to 26 months who were enrolled in services at 12 EI agencies in the greater Boston area from 2012 to 2018. The ASD screening was implemented at three of the EI sites, and the researchers used records from the nine non-screened sites for comparison.

Parents or caregivers began the multi-stage screening protocol by completing questionnaires about their children’s social and emotional behavior. If indicated, they and their children then completed an observational assessment known as the Screening Tool for ASD in Toddlers and Young Children (STAT) with their EI providers, who received specialized training to administer the STAT. EI providers were also encouraged to participate in the ASD diagnostic and feedback evaluations, which occurred in the final stage of the process.

Compared to standard practice, this multi-stage screening process was associated with an additional 8.1 diagnoses per 1,000 children—and an additional 15.4 diagnoses per 1,000 children in Spanish-speaking families. Among non-Spanish-speaking families, the researchers observed a smaller increase in the rate of ASD detection, at an additional 6.9 diagnoses per 1,000 children.

In addition to racial disparities, the researchers also observed gender disparities (consistent with prior research) that showed that boys were significantly more likely to be screened and diagnosed with ASD than girls: the screening was associated with an additional 14.8 diagnoses among boys versus an additional 0.5 diagnoses among girls.

“We did not anticipate this finding, and we believe it highlights the importance of monitoring all points in the care process—whether or not disparities are expected,” Dr. Sheldrick says, noting that the study was limited to diagnoses. “Further research is needed to ensure equitable access to effective services for those who need them.”

At SPH, the study was co-authored by Dr. Megan Cole Brahim, assistant professor of health law, policy & management.

IEPs of Transition Age Students

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

 Jordan A.Findley, Lisa A.Ruble, and John H.McGrew have an article at Research in Autism Spectrum Disorders titled "Individualized education program quality for transition age students with autism." 

The abstract:

Background

Students with ASD have some of the worst postsecondary outcomes when compared to other students with disabilities indicating transition planning may not be working effectively. One source of support for postsecondary planning is development of the transition Individualized Education Program (IEP). However, little research is available to describe the current contents of transition IEPs for students with ASD. This study aimed to describe IEP and postsecondary planning quality for students with autism in their final year of high school.

Method

IEPs for 20 students with autism (Mage = 18.2 years; SD = 1.1) from two mid-southern states were analyzed. Descriptive analyses were used to identify strengths and weaknesses of IEPs and postsecondary goals based on federal law requirements and best practice recommendations.

Results

IEPs contained an average of 3.1 IEP goals and 1.6 postsecondary goals. IEP goals were most frequently related to academic, learning/work, or communication skills. All IEPs contained an employment postsecondary goal while less than half of the IEPs included an independent living postsecondary goal. Key findings include lack of goals related to social skills and the lack of alignment between present levels of performance, IEP goals, and postsecondary goals.

Conclusions

IEPs for students with ASD in their final year of school do not consistently meet standards outlined by federal law or best practice recommendations necessary for successful transition from high school.

RFK Jr. v. Black People

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 leading antivaxxer is Robert F. Kennedy, Jr.

David A. Love at Yahoo:

Kennedy has faced much-deserved criticism for his anti-vaccination documentary, Medical Racism: The New Apartheid, which spreads lies about vaccines and targets Black people to make its points—and a lot of money. Particularly sinister is the reality that Black people, who have suffered from a long legacy of medical racism, disproportionately suffer and die from a host of diseases, including COVID-19. The film claims vaccines are harmful to the health of Black people and compares the “dangerous experimental” vaccination of Black people in Haiti, Africa and the U.S. to the infamous Tuskegee syphilis experiment. In Tuskegee, the U.S. government used Black men as guinea pigs, leaving their syphilis infections untreated and allowing them to suffer and die from the disease. Penicillin would have treated those Black people, just as the COVID vaccine is saving Black lives today—a vaccine Kennedy believes Black people should not take.

ASD and "General Hospital"

In The Politics of Autism, I discuss depictions of ASD in popular culture.  There are now efforts to improve the representation of autistic people in the performing arts. 

Amy Mistretta at Soaps:

General Hospital viewers have watched as Ned and Olivia’s marriage has further suffered over their difference of opinion when it comes to their son Leo. However, now that Austin’s suspicions have been confirmed, and a doctor officially diagnosed Leo with Autism, the parents will have to pull together in order to be there for their boy.
...

Many may not know this but Wally Kurth’s son, Brogan George, who was born in 2004, was diagnosed with Autism. Fans and Autism parents have flooded the ABC soap actor with thanks for being a part of this storyline. “As a parent of a son with ASD, I always say ‘it’s a journey,’” he replied to one fan and shared, “Its unexpected twists and turns have made me a better father, a better man. I wouldn’t trade it.”

..

And Leo’s portrayer, Easton Rocket Sweda, had something to tell fans as well, “[Leo] got diagnosed with Autism, but you know what’s cool? I have Autism too.” In a video posted on Twitter, he went on to tell his story about having been diagnosed very young and how he couldn’t speak until he was four years old. “Now look at me.” He smiled. “I have a cool life. Kids with Autism are cool.” To all of the others out there with Autism, Sweda wanted them to know, “You’ll have a good life too.”

"Alternative Medicine" and Alternative Facts

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.

And among the many peddlers of "alternative medicine"  is Joseph Mercola.

Cameron English at the American Council on Science and Health:

According to the U.S. Centers for Disease Control and Prevention,” Mercola wrote, “the dramatic uptick [in autism] is in part due to improved and more comprehensive identification and diagnosis. However, improved diagnosis alone cannot explain this trend … No, something is going on.”

It's not clear why something has to be “going on.” Well-designed studies published over the last decade or so have shown that broadening the diagnosis to autism spectrum disorder (ASD) to account for a wider variety of symptoms explains the increase in cases.

For example, many people in the 1980s diagnosed with a developmental language disorder, up to 25 percent in one paper, would be “diagnosed unambiguously with autistic disorder” today. More extensive screening, broader public awareness, and expanded health care access have had a similar effect by uncovering previously undiagnosed cases. If this hypothesis is correct, there's been no unexplained increase in autism.

A variety of environmental exposures may contribute to autism, but this doesn't help Mercola's case. For one thing, some of the factors he wants to blame, like vaccination, aren't linked to ASD risk. “Current evidence suggests that several environmental factors including vaccination, maternal smoking, thimerosal exposure, and most likely assisted reproductive technologies are unrelated to risk of ASD,” a 2017 meta-analysis noted. More importantly, the evidence for environmental contributions to autism is still limited, the authors of a 2019 review concluded:

Our understanding of autism etiology could be advanced by research aimed at disentangling the causal and non-causal environmental effects, both founding and moderating, and gene-environment interplay using twin studies, longitudinal and experimental designs. The specificity of many environmental risks for ASD remains unknown and control of multiple confounders has been limited.

Taken together, this research suggests a less scandalous conclusion than Mercola's: there hasn't been a genuine increase in ASD, and we have much to learn about the possible environmental causes in cases that have been diagnosed.