Texas Is a Tough State

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. Some states do a reasonably good job with education and social services, but Texas has not been one of them. A 2016 Houston Chronicle investigation revealed that tens of thousands of disabled students  were refused access to services because of a de-facto enrollment cap.

Lauren Castle at The Fort Worth Star-Telegram:

Forty-six percent of Texas children ages 9 months to 35 months received a developmental screening, according to 2018-2019 data from the Annie E. Casey Foundation. The Centers for Disease Control and Prevention recommend that all children should have a developmental screening and formal test even if there are no concerns.

While pediatricians are able to help families with concerns on child development, continuous health care can be a challenge for some families. Dr. Christina Robinson, medical director at the University of North Texas Health Science Center’s pediatric mobile clinic, has noticed patients facing multiple barriers to care.

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“We have noticed that there is usually not just one barrier, but layers of barriers our families are struggling with,” Robinson said. “When one barrier may not exist one time, the next time you see them another barrier might be there when the other one hasn’t resolved.”

 The state’s Early Childhood Intervention program underwent a federal investigation that concluded in 2020. The US Department of Education determined that not all of the young children eligible for the agency’s programs were provided services, according to an Oct. 2020 letter sent to the Texas Health and Human Services Commission.

Texans Care for Children, a policy organization, stated in a 2020 report that the state program overall was under-enrolling infants and toddlers across the state, and disparities were seen among children of color. “In 2018, Texas [Early Childhood Intervention] served 2.34 percent of children under age three, compared to the national average of 3.74 percent, ranking the state 46th in the nation,” the Texans Care for Children report stated. “While Texas [Early Childhood Intervention] enrollment is low for children of all backgrounds, it is disproportionately low for Black children.”

Asian Americans with Disabilities

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.  

At NBC, Victoria Namkung reports on Princeton University undergraduate Jennifer Lee:

These experiences led Lee to found the Asian Americans with Disabilities Initiative, or AADI, in July of 2021 with a goal of amplifying disabled Asian American voices and creating space to explore the intersectional identities of being both disabled and Asian American. The youth-led nonprofit group wants to provide the next generation of disabled Asian American leaders with accessible resources to help combat anti-Asian racism and ableism.

Last week, the advocacy organization published the Asian Americans with Disabilities Resource Guide featuring first-person testimonials, comprehensive peer-reviewed research and sections such as access to disability services, mental illness and intersectionality. The nearly 80-page online guide is designed for Asian Americans with disabilities, as well as their caretakers, family members, allies, businesses and organizations.

The Antivax Toll

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.  

And speaking of…still a bit shaken after being attacked by Rep. Greene (R-GA) + Steve Bannon last wk. I’m working on an article explaining why Covid scientists who develop vaccines, other life-saving interventions don’t deserve harassment from US Congresshttps://t.co/JogSL06Hqk

— Prof Peter Hotez MD PhD (@PeterHotez) January 16, 2022

At LAT, Dr. Venktesh Ramnath, medical director of critical care and telemedicine outreach at UC San Diego Health:

Incredulous families summarily deny that COVID-19 (and absence of vaccination) could be responsible for the critical illnesses I see every day. Patients and their relatives vehemently claim that healthcare workers and hospitals are “poisoning” and “punishing,” as if part of an Orwellian plot, leading to belligerent, abusive behaviors against staff.

Many providers have become inured to uninformed rebuffs of medical recommendations, including vaccination. Educational efforts have devolved into counterproductive debates.

Far from “heroes” or even compassionate advocates for health, providers are viewed as biased technicians with dubious motives locking loved ones behind hospital doors.

One response to this emotional onslaught is, understandably, attrition. Most veteran ICU nursing staff where I work have left, replaced by temporary assignment nurses from across the country. Some physicians who have become ostracized by the very communities they serve now contemplate nonclinical work or early retirement.

Among those of us still in the trenches, some medical professionals are now breaking traditional practice norms. Providers are resorting to less evidence-based practices, desperate to help and also to avoid another conflict. By opening the door to “try everything,” they have become unwitting supporters of anti-science movements, placing additional stress on others who promote well-established, proven practices.

A 2021 release from USC:

Between 37,000 and 43,000 children in the United States have lost at least one parent to COVID-19, a “staggering” 20% increase in parental loss over a typical year, USC research shows.

The scope of deaths “is forever imprinting the lives of tens of thousands of young Americans,” said study co-author Emily Smith-Greenaway, associate professor of sociology and spatial sciences at the USC Dornsife College of Letters, Arts and Sciences. “It’s a social crisis that merits far greater attention, as well as a collective response to slow the tide of loss that’s washing over children.”

The research appeared this week in JAMA Pediatrics.

Three-fourths of children who lost a parent were adolescents, and 1 in 4 were children younger than 10. Black children have also suffered disproportionately from parental bereavement: Although they comprise only 14% of children in the U.S., they make up 20% of those who’ve lost a parent to COVID-19.

 

Vaccination, Politics and COVID-19

 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.  There is a great deal of overlap between MAGA World and the antivax movement.

At BMC Public Health, Don Albrecht has an article titled "Vaccination, politics and COVID-19 impacts."  The abstract:

The development of safe and effective COVID-19 vaccines provides a clear path to bring the pandemic to an end. Vaccination rates, however, have been insufficient to prevent disease spread. A critical factor in so many people choosing not to be vaccinated is their political views. In this study, a path model is developed and tested to explore the impacts of political views on vaccination rates and COVID-19 cases and deaths per 100,000 residents in U.S. counties. The data strongly supported the model. In counties with a high percentage of Republican voters, vaccination rates were significantly lower and COVID-19 cases and deaths per 100,000 residents were much higher. Moving forward, it is critical to find ways to overcome political division and rebuild trust in science and health professionals.

From the article:

Despite the obvious fact that vaccines save lives and reduce human suffering [34], there has been opposition to vaccination since the time of Jenner [35]. This opposition has become more organized and vibrant in recent years, with help from the Internet and social media [30, 36]. A critical event was an article published in 1998 that purported a link between the MMR (measles, mumps, and rubella) vaccine and autism. Later it was found that the research was faulty and the article was retracted in 2010. The damage, however, had been done and a strong “anti-vax” movement was growing throughout the world. The movement was greatly enhanced by tweets from Donald Trump both before his election and after he became president [31]. The consequences are profound, and vaccination rates have been declining around the world [37].

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Conservative opposition to vaccines was enhanced by the support of Donald Trump. Over the years, Trump has sent many tweets with anti-vax and pro-conspiracy theory themes. For example, in 2014 he tweeted, “Healthy young child goes to doctor, gets pumped with massive shot of many vaccines, doesn’t feel good and changes – AUTISM. Many such cases.” On September 2, 2015 he tweeted, “I am being proven right about massive vaccinations – the doctors lied. Save our children and their futures!” A study by Hornsey et al. [31] found that these statements had an effect and that Trump voters were more likely to express vaccine hesitancy, distrust medical authorities, and believe conspiracy theories about COVID-19 vaccines.

Beyond the president, other political leaders and media outlets sent divergent messages on COVID-19. Again, Republicans and the right-wing media tended to downplay the threat of the disease and express opposition to steps intended to prevent spread [93]. Fridman et al. [94] found a critical factor in vaccine resistance was exposure to right-wing media. With support from Republican leaders and the right-wing media, protests were held throughout the country in opposition to mask mandates, business and school closures, and vaccination mandates. In many communities, wearing a mask or getting a vaccine became a political statement, with many Republicans arguing that these actions violated their individual freedoms and were unnecessary anyway. The consequence was increased levels of virus spread in Republican-dominated counties. A study from early in the pandemic found that counties where Trump received a higher proportion of the vote were initially safer from the virus, but this changed as the pandemic progressed, and these counties then experienced severe impacts [95]. Research shows that a likely reason for the initial safety of Trump-leaning counties from the disease is that they tend to be more rural where people are naturally social distanced and less likely to be reliant on mass transit, conditions which enhance virus spread [61]. This same study found a positive relationship between the percent voting for Trump in a county and the severity of the pandemic in that county. In this study, we expect an inverse relationship between the percent voting for Trump and vaccination rates. Lower vaccination rates are expected to lead to higher rates of COVID-19 cases and deaths.

US Vaccination in Comparative Perspective

 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.

From Morning Consult:

California Autism Professional Training and Information Network (CAPTAIN)

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.

At Autism, Jessica Suhrheinrich and colleagues have an article titled "Practice-driven research for statewide scale up: Implementation outcomes of the California Autism Professional Training and Information Network."  The lay abstract:

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

 

Serious Problems in Pennsylvania

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.

Autistic People and Autism Research

In The Politics of Autism, I discuss research priorities.

Rebecca Poulsen and colleagues at Autism:

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.

Antivax Doctor Wins Office

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.

Jake Zuckerman at Ohio Capital Journal reports on Dr. Elizabeth Laffay, an osteopath:

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).

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.

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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.

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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