Red COVID

 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.  

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.  Trump bears much of the blame. There is a great deal of overlap between MAGA World and the antivax movement.

 

A brief history:
1. Covid arrives first in costal cities, which are heavily Democratic.
2. Then it spreads across the across the U.S. By early 2021, cumulative deaths are similar across red, purple and blue areas.
3. The vaccines arrive, and the situation changes sharply. pic.twitter.com/2YSpR5sttJ

— David Leonhardt (@DLeonhardt) February 18, 2022

Texas Voting Law v. People with Disabilities

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."

Sneha Dey at The Texas Tribune:

Republicans enacted restrictions last year on the state’s voting process, including rules on how Texans can assist voters when casting ballots. Texans assisting other voters must now fill out paperwork disclosing their relationship, indicate whether compensation was provided and recite an expanded oath, now under the penalty of perjury, stating that they did not “pressure or coerce” the voter into choosing them for assistance.

Texans who offer or accept compensation for providing voter assistance would be in violation of the new rules, creating anxiety among those who assist people with disabilities as part of their job.

“There are voters with disabilities who use their personal aides or personal attendants to assist them in completing daily tasks, and voting is a daily task,” said Molly Broadway, a voting rights training specialist at Disability Rights Texas, adding that she has already received calls from assistants afraid of incurring criminal charges for activities that are usually part of their duties. “It’s a very present, very real need that exists.”

Texans who drive at least seven voters to the polls are also considered assistants and must comply with new rules on compensation. Broadway said she has heard concerns from nursing home employees who provide transportation to polling places.

The new legislation also limits any kind of voter assistance to “reading the ballot to the voter, directing the voter to read the ballot, marking the voter’s ballot, or directing the voter to mark the ballot.” But voters with intellectual and developmental disabilities might need additional help, such as gestures or reminders about how they had intended to vote, to get through the process, Broadway said.

Mortality Rates

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

 Ferrán Catalá-López and colleagues have an article at JAMA Pediatrics titled "Mortality in Persons With Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder: A Systematic Review and Meta-analysis."  

Key Points

Question  Are persons with autism spectrum disorder (ASD) or attention-deficit/hyperactivity disorder (ADHD) at a higher risk of dying compared with the general population?

Findings  In this systematic review and meta-analysis of 27 studies, persons with ASD or ADHD had higher mortality rates than the general population. When causes of death were examined, ASD and ADHD were associated with higher mortality due to unnatural causes (eg, injury, poisoning, and other), and only persons with ASD had an increased risk of mortality from natural causes of death (eg, neurologic, respiratory system, and cancer).

Meaning  Having ASD or ADHD may be associated with higher mortality risks.

From the article:

This systematic review and meta-analysis comprehensively assess for the first time, to our knowledge, the available evidence regarding the risk of mortality in persons with ASD or ADHD. We included 27 epidemiologic studies in our quantitative evaluation, 16 of which were judged to be at low risk of bias. We found that ASD and ADHD are associated with a significantly increased risk of all-cause mortality. However, the results should be interpreted with caution because there was evidence of heterogeneity between study estimates of the mortality risks. When we examined causes of death, ASD and ADHD were associated with higher mortality risk due to unnatural (external) causes, and only persons with ASD had an increased risk of mortality from natural causes of death, but the evidence was judged as only low confidence. Fewer studies exist examining the risk of mortality among first-degree relatives of persons with ASD or ADHD, to our knowledge.

Several mechanisms, including health determinants and biological pathways, have been suggested as potential factors that might explain the excess premature mortality among children and young persons with ASD or ADHD. However, establishing a causal relationship is difficult because the associations between mortality and childhood-onset developmental disorders are complex. Severe mental and behavioral disorders appear to be associated with reduced life expectancy, both in terms of mortality from external causes and mortality from other medical conditions or diseases.10,11 Findings from previous studies and reviews have suggested that children and adults with ASD/ADHD are associated with coexisting mental and neurologic conditions (such as oppositional and conduct disorders, tic disorders, epilepsy, depression, anxiety, and substance use disorders).3-5,57 As children and young persons with ASD/ADHD age, they often experience emotional and social difficulties.3-5 Some people also exhibit impulsive forms of behavior with negative impacts on their quality of life. Behaviors such as impulsivity and/or inattention can be contributing factors for injuries and unintentional incidents in children with ASD/ADHD.58,59

Previous studies16,17,49 have tested potential modifying effects of comorbidity on mortality risk for persons with ASD/ADHD. For example, Dalsgaard et al,16 Sun et al,17 and Schendel et al49 suggested increased mortality RRs in persons with ADHD or ASD with comorbid neurologic or mental conditions (eg, oppositional defiant disorder, conduct disorder, or substance use disorder). However, it should be noted that presence of ASD and/or ADHD with any distinct additional medical condition (the so-called comorbidity or multimorbidity) may be confounded by previous exposures (such as socioeconomic factors, environmental factors, and childhood abuse).60 Prevention efforts to reduce mortality in persons with ASD or ADHD may need to address the conditions that appear to mediate causes of death. While potentially preventable, reducing excess premature mortality (eg, due to external causes) can be challenging. For example, systematic screening would be advisable in health services and social care, and preventive education can be feasible in almost all circumstances. However, some persons with ADHD/ASD are often from socioeconomically disadvantaged groups/areas and are more likely to be exposed to environmental risk factors (eg, substance misuse, violence) than other populations.61-63 Similarly, studies64,65 have shown that persons with ADHD or ASD may be less likely to receive timely diagnosis and prompt care. All these factors are possible complications of ASD/ADHD, so the implication for practice is that health care professionals should recognize their importance.

Credentialed Crackpots and COVID

  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.”

The credentialed crackpots are making the most of COVID.

Kiera Butler at Mother Jones:

America’s Frontline Doctors, a far-right group of physicians, has been cashing in on the pandemic since the beginning. In addition to advocating against vaccines and masks, the group has run its own network of doctors who, for a fee, will prescribe ivermectin, hydroxychloroquine, and other unproven—and, in some cases, potentially dangerous—Covid remedies. The group also has offered full-throated endorsements of the anti-vaccine convoys wreaking havoc in Ottawa. A headline on the group’s website on Monday claimed that “Canadian PM Trudeau’s grip on power is slipping.”

The Frontline Critical Care Alliance, a group of scientists and physicians that runs a service connecting people with providers willing to prescribe the same unproven medicines, also supports the convoys. In a tweet on Monday, the group urged its 190,000 followers to take part in a California convoy.

Another notable convoy cheerleader is the group that orchestrated the Great Barrington Declaration, an October 2020 document that sought to remove most public health restrictions under the premise that most Americans would develop Covid immunity through infection. The document was highly influential—Trump adviser Scott Atlas tried to convince the administration to adopt the approach. It was the authors’ elite credentials that gave the declaration an air of scientific gravitas: The lead signatories are faculty members from Harvard, Stanford, and Oxford, though these institutions never endorsed the extreme herd-immunity strategy, and practically all public health agencies opposed it. What few people realized was that the Great Barrington Declaration was, in fact, a project of the American Institute for Economic Resources, a libertarian think tank.

Texas Medicaid

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities.

From Autism Speaks:

This month, Texas became the 50th state to implement its autism services benefit which provides coverage for applied behavior analysis (ABA) therapy when medically appropriate for autistic children enrolled in Medicaid. Texas follows New York’s 2021 implementation and Illinois’s 2020 implementation, making it one of the last three states to make available this often life-changing therapy, which is widely covered within commercial insurance.

ABA is a therapy based on the science of learning and behavior and is provided by a board-certified behavior analyst (BCBA) or state-licensed behavior analyst (LBA) and members of their team. It applies our understanding of how behavior works to real situations, to increase behaviors that are helpful and decrease behaviors that are harmful or negatively affect learning. ABA programs can help increase language and communication skills; improve attention, focus, social skills, memory and academics; and decrease problem behaviors. It is a flexible therapy that can be adapted to meet the needs of each unique person. For more information: Applied Behavior Analysis (ABA) | Autism Speaks.

This behavioral health therapy is provided under the federal EPSDT (Early and Periodic Screening, Diagnostic and Treatment) requirement, which mandates a variety of medically necessary services for children under the age of 21. These services include baby and child well check visits at specific ages and stages of development, physical and mental health screenings and evaluations, as well as other preventative services and treatments. The Center for Medicaid and CHIP Services (CMCS) describes the goal of EPSDT: “to assure that children get the right health care they need, when they need it – the right care to the right child at the right time in the right setting.” While there has been progress toward this goal—as evidenced by the rollout of the new ABA benefit—there is still considerable work needed to ensure that children with autism get the “health care they need, when they need it.” Specific to children accessing ABA, many states have an inadequate network of providers due to low reimbursement rates, structural/credentialing issues or other factors.

Some parents and self-advocates criticize ABA.   See here for autistic people describing distress as a result of ABA.

Public Knowledge of Autism

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people.

At Research in Autism Spectrum Disorders, Megan E. Golson and colleagues have an article titled "Current state of autism knowledge in the general population of the United States."  The abstract:

Background

The increasing prevalence of autism warrants increased knowledge for laypersons who engage with autistic individuals . However, limited research has been conducted on the general population’s knowledge of autism.

Method

The present study describes the current level of autism knowledge among a general population sample in the United States (N = 318) using the Autism Spectrum Knowledge Scale, General Population version (ASKSG; McClain et al., 2019).

Results

Participants in our study were more knowledgeable about the symptoms and behaviors associated with autism than the etiology, prevalence, and assessment procedures.

Conclusions

The lack of knowledge in the general population surrounding autism necessitates further efforts to increase public awareness.

From the study:

Overall, participants answered an average proportion of .643 (SD = .186) of items correctly on the ASKSG. Participant knowledge was evaluated in terms of content area. Regarding knowledge of autism etiology and prevalence, most participants correctly identified that a lack of motherly warmth was not a cause of autism (.858). However, few participants knew that there are racial/ethnic disparities in autism identification (.362). Concerningly, nearly a third (.296) endorsed the myth that vaccines cause autism. Related to autism services, most participants correctly identified that social skills interventions were an evidence-based service (.830). Less than half of participants knew that restrictive diets are not an evidence-based intervention for autism (.481).

...

The results of this study have multiple implications related to autism identification, services, advocacy, and public policy. These findings highlight multiple areas of need within the general population. First, many participants endorsed misconceptions about the causes (e.g., vaccine etiology) and research-supported services (e.g., restrictive diets) for autism. Continued belief in the vaccine myth is concerning as it directs research resources toward redundant research affirming the lack of connection between vaccinations and autism (Dudley et al., 2018) and may contribute to lower rates of vaccination, which threatens personal and public health (Żuk et al., 2019). Misconceptions about autism services are also concerning. This may result in families wasting money on ineffective interventions instead of available, efficacious services. Lack of knowledge about autism diagnosis and identification may contribute to delays in age of diagnosis (Maenner et al., 2020). Increased autism screening, parent psychoeducation, and communication between primary care providers and parents are crucial to addressing this knowledge gap and decreasing age of diagnosis.

Second, while the general population exhibits adequate knowledge of common symptoms associated with autism, knowledge of assessment and diagnostic procedures is limited. Increased public knowledge regarding this process could increase access to early identification services. Public institutions (e.g., schools, community centers) and clinics should prioritize public awareness campaigns to address knowledge gaps. Including fliers in central locations, holding informational sessions, and playing autism knowledge videos (e.g., Ha et al., 2021) can help toward this effort. Efforts to increase the accessibility of autism services (e.g., regular autism screening, training of rural providers in autism) may also increase the awareness of these processes in the general population.

 

Primary Care and Autism

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Noam Levey at KHN/NPR:

Primary care physicians — a convenient option for many families — could fill some of those gaps if the doctors had better training, said Kristin Sohl, a pediatrician who teaches these skills at the University of Missouri. "We've got to make this accessible so that people can have access to what they need when and where they need it," Sohl said.

But many physicians feel ill-equipped to provide this care.

In one survey, just 40% said they were very confident that their care for patients with disabilities was as good as their care for other patients. Only about half strongly agreed that they welcome patients with disabilities.

Training remains one barrier. Even though as many as 16 million Americans have autism or another intellectual or developmental disability, the subject is a small part of the curriculum at most medical schools.

Another obstacle, Sohl and others say, is a tendency in American health care to simply refer patients to specialists. "It's so hierarchical," Sohl said.

Changing that has become [Dr. Mai] Pham's life's work.

She quit her job at a major health insurer in 2020 to start the Institute for Exceptional Care. The nonprofit aims to overhaul the way doctors are trained and paid so they can spend more time with patients with disabilities, instead of rushing through visits because of billing pressures.

"We've made huge investments in the science and in some ways the clinical aspects of care," Pham said. "But we haven't thought about how to make any of that sustainable.

Nebraska Bill to Require Screening

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

From the Nebraska Legislature:

School boards would require children to be screened for autism spectrum disorder under a bill heard Feb. 8 by the Education Committee.

The screening would be in addition to the physical examination and visual evaluation required before a child enters kindergarten or enrolls in school after transferring from another state.

Omaha Sen. Jen Day, sponsor of LB997, said many young children are not screened for ASD, resulting in late diagnosis and lack of autism-specific treatments and services during a crucial developmental period. A universal screening requirement would help improve the quality of life for this small number of children each year, she said.

A physician, physician assistant, advanced practice registered nurse, school nurse, school psychiatrist or other trained individual could conduct the screening using an evidence-based developmental screening tool appropriate to the age of the child.

The screening would not be required if a child’s parent or guardian objects in writing.

Katy Menousek, a behavioral analyst at Boys Town National Research Hospital, testified in support of LB997. Although many parents can identify the signs and symptoms of ASD, she said, universal screening would be “greatly beneficial” to children whose parents are not aware of ASD.

Westin Miller also testified in support, saying the bill could address a “critical diagnosis gap.” Miller said, however, that lawmakers also should consider how an early ASD diagnosis in Nebraska can lead to applied behavioral analysis, one of the most commonly prescribed interventions for autistic children.

He said ABA is an “inherently harmful framework” that he and many other autistic people believe devalues their predispositions, disregards their consent and does not assume their competence.

“What I’m asking is that you please engage with me and other autistic people about this conversation, that you don’t have conversations about caring for autistic people without autistic people in the room,” Miller said.

No one testified in opposition to LB997 and the committee took no immediate action on it.

Deinstitutionalization, Insurance, and Prevalance

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

Rachel Burr Gerrard at STAT:

As the deinstitutionalization movement took off, many children who would have been diagnosed with mental retardation were instead diagnosed with autism, not because the diagnosis was more accurate but because its treatment was preferable. As autism diagnoses increased, diagnoses of mental retardation and other learning disabilities decreased. More diagnoses and more patient advocacy led to more money dedicated to autism therapy and research, which in turn led to even more diagnoses. This trend has continued today as the number of psychiatric beds continues to decrease and parent advocacy groups successfully lobby to raise billions for autism research.

Another powerful factor behind the rise in autism rates is the passing of insurance mandates. Since 2001, all 50 states have instituted mandates requiring non-self-funded private insurance plans to cover behavioral therapies for autism. These mandates can save families up to $50,000 a year on treatment. The prevalence of autism increased an average of 10% directly following a state’s mandate implementation and 18% after a mandate had been place for a few years.

Insurance mandates increase autism rates because, in borderline cases, practitioners and parents push for a diagnosis that ensures a child receives coverage for the help the child and family need. The families of children with developmental disorders other than autism must often rely on broad laws such as the Individuals with Disabilities Education Act (IDEA), which vaguely states that each child must receive a “free and appropriate public education in the least restrictive environment.” IDEA’s implementation is underfunded by Congress and largely depends on each state’s interpretation of it. With such limited options for children with special needs, it makes sense that caring practitioners might push for a diagnosis that guarantees children receive the help they need.

Media Dissemination of Autism Research

 In The Politics of Autism, I examine the role of social media in the development of the issue.  Social media can spread vaccine disinformation, but they can also provide autistic people and their families with a way to access peer-reviewed research.

At The Journal of Autism and Developmental Disorders, Anne Longo & Brittany N. Hand have a brief report titled  "The Impact of Social and News Media Coverage on the Dissemination of Autism Research." 

In the past decade, there has been more research on social media use and its effects on article dissemination, including the effects on article downloads and citations (Palamar & Strain, 2021). Our paper provides the first analysis of the relationship between autism research dissemination on social and news media and downloads and citations. Even after controlling for open access, which is known to greatly increase the chance of article downloads and citations, we found that social media shares and news media coverage were significantly associated with more article downloads and citations. Specifically, our analyses showed that article downloads increased significantly with every 10 Twitter shares, at least one Facebook share, and any news media coverage (Table 2). Articles citations increased significantly with every 10 Twitter shares and any news media coverage.

Our findings also provide the first description, to our knowledge, of characteristics of autism research articles with most downloads, citations, social media shares, and news coverage. Interestingly, despite being the largest area of funding for autism research, studies on the biology of autism were not among the most downloaded, cited, or shared articles (Harris et al., 2021). In contrast, most of the highly downloaded, cited and shared articles focused on high-priority research areas identified by the IACC like treatments and interventions and services (IACC, 2018).

Autism is a popular topic of online discussion among researchers and the autism community. The autism community is incredibly active on social media, as autistic individuals spend more time using the internet and computer-mediated communication than non-autistic individuals (Kim, 2019; MacMullin et al., 2015). Widespread sharing of an article increases visibility among autism community members who, if interested, may download the article to learn more. Additionally, sharing an article via social media allows for engagement and opportunity for discussion with the autism community and researchers. Articles in this study tended to be shared most on Twitter, which is not surprising as it is the most used researcher posting cite (Dol et al., 2019) and is used by the autism community more than Facebook (van Schalkwyk et al., 2017).

Our results showed that having news media cover a research article had a large positive association with downloads and citations. However, relatively few articles in our study (< 10%) were covered in news media. The five articles that were most covered in news media (Supplemental Table) tended to be open access (80%), focus on autistic children and adolescents (100%), and cover topics like: (a) outcomes as a function of race or ethnicity (40%), or (b) novel treatments and interventions (40%). This result shows that despite increased focus on social media, news media still plays an important role in widespread reach of research findings and provides insights as to the types of articles most likely to receive media coverage.

Another Potential Risk Factor: Anorexia During Pregnancy

In The Politics of Autism, I discuss various ideas about what causes the condition. 

At JAMA Network Open, Angla Matel and colleagues have an article titled "Analysis of Neurodevelopmental Disorders in Offspring of Mothers With Eating Disorders in Sweden."  From the abstract: "These findings suggest that children born to mothers with eating disorders, in particular disorders that were active during pregnancy, were at increased risk of developing ADHD and ASD. "

Anorexia thus joins a growing list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Acetaminophen;
• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Fever;  
• Birth by cesarean section;
• Anesthesia during cesarean sections;
• Maternal and paternal obesity;
• Maternal diabetes;
• Maternal and paternal age;
• Grandparental age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Cannabis use during pregnancy;
• Antidepressant use during pregnancy;
• Polycystic ovary syndrome;
• Infant opioid withdrawal;
• Zinc deficiency;
• Sulfate deficiency;
• Processed foods;
• Maternal occupational exposure to solvents;
• Congenital heart disease;
• Insufficient placental allopregnanolone.
• Estrogen in the womb;
• Morning sickness;
• Paternal family history;
• Parental preterm birth.

Hijacking the Language of Civil Rights

 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. 

Some antivaxxers try to hijack the language of civil rights.

Cleve R. Wootson Jr. at WP:

Other Trump allies have wrapped themselves in the rhetoric and symbolism of equality movements to make political points, specifically when it comes to vaccine and mask mandates. Robert Kennedy Jr., a former Trump adviser who has long spread misinformation about vaccines, recently invoked Anne Frank in suggesting that Jews had more freedoms during the Holocaust than unvaccinated Americans do now, comments for which he later apologized. Lynne Patton, a Trump adviser, posted a picture on Instagram of a Black man sitting at a lunch counter, surrounded by jeering White men, one of whom says “We don’t allow unvaccinated folk in here.”

Patton, who is Black, wrote in the caption: “[T]hose who support racist and unconstitutional mandates in 2022 WILL BE JUDGED BY HISTORY just as those who supported them 60 YEARS AGO are judged today.”

"Demonic Autism" Pastor is also a Book Burner

 In The Politics of Autism, I discuss various ideas about what causes the condition. Many posts have discussed the potential correlates, risk factors, and possible causes that have been the subject of serious studies.  Genetics tops the list.  One thing that is NOT on the list is demonic possession.  

Morgan Sung at NBC:

A far-right pastor hosted a book burning event, encouraging parishioners to toss books like "Harry Potter" and "Twilight" into a fire to denounce what he described as "demonic" materials.

Greg Locke, head pastor at Global Vision Bible Church, held a book burning event Wednesday night, and urged followers to burn "evil garbage" like young adult fantasy books, tarot cards, "voodoo dolls and crystals."

"Bring all your Harry Potter stuff. Laugh all you want haters. I don't care. IT'S WITCHCRAFT 100 PERCENT," Locke said in an Instagram post Monday. "All you 'Twilight' books and movies. That mess is full of spells, demonism, shape-shifting and occultism."

In a video livestreamed on Facebook, churchgoers hurl books and other items deemed associated with "witchcraft" into a massive bonfire on the church's parking lot in Mount Juliet, Tennessee. The burning begins about an hour into the livestream.

...

This is not the first time Locke has made headlines. The pastor has been permanently banned from Twitter for spreading Covid vaccine misinformation. He previously described the vaccine as "sugar water" and said that he'd turn away churchgoers if they wore masks to his services. He also criticized Republican Tennessee Gov. Bill Lee as a "coward...noodle...waffler" for signing an executive order that would allow the National Guard to assist overwhelmed hospitals during a Covid outbreak. Locke claimed that children with autism are possessed by demons, insisting that the diagnosis doesn’t exist in the Bible.