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Saturday, April 30, 2022

Julia Bascom and Coalitions

  In The Politics of Autism, I write:

In 2006, 19-year-old Ari Ne’eman, who had a diagnosis of Asperger’s, cofounded the Autistic Self Advocacy Network (ASAN) in response to what members saw as the absence of autistic voices in policy debates on autism. As a motto, the group adopted a saying from the broader disability rights movement, “Nothing About Us Without Us.” ASAN gained national publicity in 2007, with a successful campaign against billboards by the NYU Child Study Center depicting autism as a kidnaper. The ads, said the group, stigmatized people with autism by suggesting that their condition was hopeless. Although billboards appeared only in New York City, the response was nationwide. ASAN used the Internet to join forces with other disability rights organizations and gather thousands of petition signatures.

At The 19th, Sara Luterman profiles Julia Bascom, the executive director of the Autistic Self-Advocacy Network:
She and other disability advocates “were on the Hill constantly,” fighting to stop the Trump administration from gutting Medicaid. Protesters from the radical group ADAPT were dragged out of their wheelchairs by Capitol Police outside then-Majority Leader Mitch McConnell’s office and from Senate hearing rooms. At the same time, Bascom and other disability advocates were meeting with senators and representatives, begging them not to cut or cap Medicaid spending. The attempt to cut Medicaid and repeal the ACA failed.

The fight gave Bascom and other disability advocates new political capital. Labor unions and the reproductive rights movement both have strained histories with the disability community. That has changed significantly since 2017, in large part due to Bascom and other disability leaders building and maintaining bridges where none had previously existed.

“Before 2017, you wouldn’t get disability advocates and labor in the same room. The effort to expand [home care] has pulled together disability, aging and labor in a way that’s unprecedented. And Julia is a major part of that,” Nicole Jorwic, a longtime disability advocate and colleague, told The 19th

Friday, April 29, 2022

LAUSD Agrees to Address Special Ed Failure

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

Paloma Esquivel and Melissa Gomez at LAT:
Los Angeles Unified failed to provide appropriate education to students with disabilities during the pandemic as required under federal law and must provide extra services to help some of the most vulnerable students recover from the significant voids in their learning, the U.S. Department of Education announced Thursday.

The investigation, conducted by the department’s Office for Civil Rights, confirms what many parents have alleged since schools were first closed — that they basically had to fend for themselves during distance learning as their children were left with little if any education and specialized assistance. The district has entered into a voluntary agreement with the federal department to fix its failings.

...

The investigation found that the district failed to provide services identified in students’ legally required education plans, failed to accurately or sufficiently track services, and informed staff that the district was not responsible for providing so-called “compensatory services” aimed at helping students make up for what they lost, because the district was not at fault for the campus closures.

The agreement calls for the district to offer make-up services “to remedy any educational or other deficits that result from a student with a disability not receiving the evaluations or services to which they were entitled.”
...

Attorney Valerie Vanaman, who has been critical of the district’s treatment of students with disabilities throughout the pandemic, said she was happy about the agreement but continues having concerns about the district’s ability to follow through.

“This is a nice outcome to see. It gets us partway there, " she said. “Where the rubber hits the road is ‘how will they actually implement it?’”

Thursday, April 28, 2022

Neurodivergent Employees

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

Caitlyn O'Neil, CPA, wasn't always open about being on the autism spectrum. It took a couple of years before the senior tax accountant at CBIZ MHM in Denver told most of her colleagues she's autistic. "Before that I really struggled trying to explain some of my behaviors. I just called it 'busy season brain,'" she said. "Then I just decided it was too much stress, and just acknowledging this is why I'm different, that lifted a huge weight off my shoulders."
...

Daniel Openden, Ph.D., is president and CEO of the Southwest Autism Research & Resource Center (SARRC).
...

One of the best things firms can do is speak with people with autism to better understand their experiences, O'Neil said. They can also turn to organizations like the Autism Self Advocacy Network and the Autistic Women & Nonbinary Network. As a place to start, Openden recommends working with an agency that helps autistic people find employment.

Firm leaders should understand that neurodivergent individuals don't want to work differently than their neurotypical colleagues, said Amanda Gessner, CPA, audit manager at Schmitz-Holmstrom in Bismarck, N.D., who is neurodiverse. But operating under the same conditions is "physically or mentally not possible at times," she explained.

Gessner believes the timing is right for firms' focus on DEI to include neurodivergent employees. "By being more inclusive and taking steps to accommodate the needs of your team, it can build efficiencies because everyone is working in their best environment," she said. "It can also increase retention, which I think is the biggest benefit at this time."

Wednesday, April 27, 2022

Trump Jr and Wakefield to Appear in Utah

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.  The ur-antivaxxer of our time is the disgraced Andrew Wakefield.


Bryan Schott at the Salt Lake Tribune:
Donald Trump Jr. is the scheduled headliner at an event in Salt Lake City just before the June primary election. The eldest son of former President Donald Trump is the top-billed guest at the Utah Liberty Festival, scheduled for June 17 and 18 in West Valley City.

Other right-wing celebrities slated to attend the event include Rep. Madison Cawthorn and former Trump administration official Kash Patel.

...

Another guest is Dr. Bryan Ardis. He is the central figure in a faux documentary circulating in conspiracy communities that claims the coronavirus pandemic results from cobra venom being put into the water supply to sicken people and imbue them with Satanic DNA. Ardis, who claims to have uncovered the plan, alleges could end the pandemic and blames the plot on Dr. Anthony Fauci and the Pope.

British anti-vaccine activist Andrew Wakefield, who authored a discredited study linking the MMR vaccine to autism, is also scheduled to appear.

Tuesday, April 26, 2022

COVID Vaccine Hestitancy Among Autism Caregivers


 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

A release from Pediatric Academic Societies:
A new study examines factors associated with COVID-19 vaccine hesitancy and uptake in the autism community. Findings from the study will be presented during the Pediatric Academic Societies (PAS) 2022 Meeting, taking place April 21-25 in Denver.

Individuals with autism spectrum disorder are at increased risk of hospitalization from COVID-19. Vaccines reduce the likelihood of COVID-19 infection and severity of disease. Historically, parents of children with autism spectrum disorder are more likely to be vaccine hesitant, thus delaying or declining childhood vaccinations.

The study found early COVID-19 vaccine hesitancy waned over time and a majority of caregivers and dependents received the vaccine following FDA approval. Firmly held vaccine-hesitant beliefs, not specific to COVID-19, influenced vaccine uptake in a minority of autism spectrum disorder caregivers.

“We conducted this study to better understand how baseline vaccine hesitancy in the autism community, which is higher than the general population, was impacting parent decision-making about COVID-19 vaccines,” said J. Kiely Law, MD, MPH, director of research operations at SPARK, a Simons Foundation autism research initiative. “This was especially important to understand since other studies were finding that children with developmental disabilities, like autism, were at increased risk of hospitalization due to COVID-19. Getting children vaccinated was critical to reducing this risk.”

Dr. Law added: “Early on, 60% of parents were hesitant about their child receiving the COVID-19 vaccine. Ten months later, it was reassuring to see that the majority of parents in our study made the decision for their child with autism to get vaccinated.”

Dr. Law will present “COVID-19 Vaccine Hesitancy – Beliefs and Practices in Caregivers of Children/Dependents with Autism Spectrum Disorder” on Saturday, April 23 at 1 p.m. MDT. Reporters interested in an interview with Dr. Law should contact PAS2022@piercom.com.

The PAS Meeting connects thousands of pediatricians and other health care providers worldwide. For more information about the PAS Meeting, please visit www.pas-meeting.org.

Sunday, April 24, 2022

Women and Autism Diagnosis


Alokananda Rudra at The Conversation:
But while autism and ADHD still affect a greater number of men, more women are reporting being diagnosed with these conditions as adults. Again, this increase is probably due to any number of factors. But social media may also be playing a role, with women able to use platforms such as Twitter and TikTok to spark discussions and share their experiences and stories.

One constant in the experiences that many women have shared on social media is how long they waited for a diagnosis. Many have even spoken about how they were even brushed off by healthcare professionals when seeking a diagnosis, told pointblank that they’re “not autistic” or that their problem is “anxiety and not ADHD”. For many, not knowing why they felt different from others left them feeling confused and even depressed.

This isn’t surprising, as autism and ADHD are both often missed or even misdiagnosed in women. Nearly 80% of women with autism are misdiagnosed – often with conditions such as borderline personality disorder, eating disorders, bipolar disorder and anxiety. It’s currently unknown how often women with ADHD are misdiagnosed.

But there are a number of reasons that may explain why this happens. The first is that autism and ADHD symptoms are different in women than they are in men. Other conditions common in people with autism and ADHD (such as anxiety and depression) may also make it appear that symptoms are the result of these conditions instead. Women with autism and ADHD may also learn over time how to hide their symptoms from people – which may further lead to misdiagnosis or delayed diagnosis.

Another major problem is that autism and ADHD are still often seen as “male disorders”. While it’s true that both conditions affect a higher proportion of men than women, it also means that the current tools used to diagnose people with these conditions tend not to recognise female symptoms as readily.

Saturday, April 23, 2022

Antivax Ideology

 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 Kaiser Health News

Anti-Vaccine Ideology Gains Ground as Lawmakers Seek to Erode Rules for Kids’ Shots

Not long ago, Kansas showed strong bipartisan support for vaccines as a tool to support a robust public health system.

But bills with language expanding religious exemptions for childhood vaccine requirements were passed by the state Senate in March and now face the House when the legislature reconvenes April 25.

They are among the more than 520 vaccine-related bills introduced in statehouses nationwide since Jan. 1, according to data from the National Conference of State Legislatures. Of those bills, 66 specifically relate to childhood vaccine requirements in 25 states.

In Missouri, for example, legislators are considering a measure exempting private school students from vaccine requirements. In Louisiana, a bill in the House would prohibit vaccinations on school property and at school-sponsored events.

Fewer than 10% of the bills will likely gain any traction, but the volume of attempts to roll back vaccine requirements is alarming, said Rekha Lakshmanan, director of advocacy and public policy at the Immunization Partnership, a vaccine education organization.

“Those are all chipping away at one of the end goals for anti-vaccine activists, which is completely doing away with school requirements,” said Lakshmanan. “That’s what people need to be paying very close attention to.”

All states require specific childhood vaccinations for illnesses such as polio, measles, and mumps, but exemptions vary. They all allow exemptions for people with medical concerns, 44 states allow religious exemptions, and 15 allow philosophical exemptions, according to 2021 data from the National Conference of State Legislatures.

Vaccinations are central to public health efforts at disease control and are foundational to the country’s social and economic system, said Brian Castrucci, CEO of the de Beaumont Foundation, a public health advocacy organization.

“Politicians are poking holes in our public safety net,” Castrucci said of the onslaught of anti-vaccine legislation. “Vaccines, in and of themselves, are not medicine. It’s all of us collectively protecting each other.”

To be sure, anti-vaccine activists have existed as long as vaccines. And legislation to limit requirements to vaccinate against diseases such as polio, measles, and meningitis are not new. But, according to public health experts, the movement has gained momentum amid the coronavirus pandemic, boosting the reach of high-profile anti-vaccine activists.

“If you had told me that a pandemic — and what I would consider a miraculous vaccine for that disease — would trigger an anti-vax surge, I would never have believed it,” said Tracy Russell, executive director of Nurture KC, which works to improve children’s and family health in the Kansas City area of Missouri and Kansas. “But that’s exactly what happened.”

One pending Kansas bill would mandate that vaccine exemption requests be accepted without scrutiny if based on religion or personal beliefs. Currently, the state leaves it to day care centers and school districts to accept requests for religious exemptions.

State Sen. Mark Steffen stands behind amendments he pushed nullifying Kansas’ childhood vaccine requirements. The Republican, who said he is “not an anti-vaxxer in any shape or form,” lamented mandates he said were a vestige of a “kinder, gentler time” and suggested that individual rights supersede mandates designed to protect public health.

Steffen, an anesthesiologist who said he is under investigation by the Kansas Board of Healing Arts for prescribing ivermectin to covid patients, said suggestions that a resurgence of vaccine-preventable diseases could occur if vaccination rates fall amount to fearmongering by people paid off by the pharmaceutical industry.

But Andy Marso, a Kansas vaccine advocate who launched a Facebook page to organize pro-vaccine Kansans, called such assertions insulting and said he doesn’t take any money from drug companies. He contracted meningitis B in 2004 before vaccines against it were available. He was in a coma for three weeks and had parts of all four limbs amputated.

“For me, this has been part of what helped me move on from that trauma,” Marso said. “I have a story that people need to know about.”

The legislative efforts to nullify the requirements fly in the face of widespread public support for vaccines and vaccine mandates, nationally and in Kansas, said Russell. More than 9 in 10 Kansas voters believe wellness vaccines are safe and support vaccine requirements, according to a survey conducted this year for Nurture KC. Kansas voters overwhelmingly support religious exemptions, but a majority say they support tightening existing exemptions, according to the survey.

Before the pandemic, outbreaks of measles in Kansas, Minnesota, Washington, and other states, as well as outbreaks of pertussis, had reinforced the idea that preventing disease spread required consistently high vaccination rates. And mandates, in part, helped create the mechanism for public health authorities to make vaccines widely available and accessible, said Erica DeWald, spokesperson for Vaccinate Your Family, an advocacy organization.

“Lost in what has become a political conversation around requirements is the danger of these vaccine-preventable diseases,” said DeWald. “All it takes is one case.”

Previously, anti-vaccine activists relied on long-since-debunked narratives that vaccines cause autism, said RenĂ©e DiResta, the research manager of the Stanford Internet Observatory, which studies cyber policies and how people use the internet. But in the years leading up to the pandemic, the movement began to shift its focus to align more with the populist ideology of “individual freedoms” put forward by Second Amendment advocates and the tea party.

Donald Trump expressed vaccine skepticism long before becoming president. But it was when the then-president was said to be considering naming Robert F. Kennedy Jr., a well-known anti-vaccine activist, to “investigate” vaccine safety that the movement found its footing, said Timothy Callaghan, assistant professor in the health policy and management department at Texas A&M University. The embrace of anti-vaccine messaging by prominent politicians — whether because they are “true believers” or just see it as political necessity — has “lent legitimacy that the movement lacked before,” Callaghan added.

The similarity of bills from state to state raises red flags to vaccine advocates because it suggests that a coordinated effort to dismantle vaccine requirements and public health infrastructure is underway.

“Because the anti-vax movement is becoming aligned with the far right, I think those information-sharing channels are becoming more sophisticated,” said Northe Saunders, executive director of the SAFE Communities Coalition, a pro-vaccine organization. “Their ability to attract far-right politicians who see vaccines as a cause has grown. That gets them attention, if not votes.”

Not all Republicans find common cause with anti-vaccine activists, said Kansas state Rep. John Eplee, a Republican and family physician. He said he voted against some covid-related restrictions, like a statewide mask mandate, because he believed doing so might help defuse pandemic tensions. But he advocates for all vaccines, including covid shots.

Enough others in the Kansas legislature agreed in the case of one bill: Language targeting vaccines, under the auspices of parental rights, was ultimately removed before it was passed. Some observers are cautiously optimistic the House won’t pass the other bills as written.

While Eplee hopes the “passions” inflamed by covid die down with distance from the early days of the pandemic, he’s concerned that voters have forgotten the damage done by vaccine-controllable diseases, making them susceptible to disinformation from determined anti-vaccine activists and the politicians among their ranks.

“I hate to see human nature play out like that,” said Eplee. “But if people are vocal enough and loud enough, they can swing enough votes to change the world in a not-so-good way for public health and vaccinations.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Thursday, April 21, 2022

Voting Laws and 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."

Eric Garcia at MSNBC:

Much of the criticism of the voter suppression bills Republicans have been passing has, understandably, been focused on how those laws will hurt people of color. But as Republicans assaulted voting rights in state legislatures, plenty of people with disabilities predicted that the new laws would hurt them, too. Unfortunately, they have been proven right. People with disabilities have seen their ability to cast a ballot significantly curtailed.

During Texas’s primary election last month, Stateline has reported, many voters with disabilities reached out to Disability Rights Texas because either they had not received their mail-in ballots in time for the election or they had had their ballots rejected because of new signature and personal identification requirements.


The law requires that people who assist a voter with their ballot must fill out new paperwork that discloses their relationship with the voter and specifically prohibits people who accept compensation from providing assistance, which worries people with disabilities who require care workers to perform daily tasks. According to The Associated Press, the typical mail ballot rejection rate is around 2 percent but, during last month’s election in Texas, that rejection rate skyrocketed to around 13 percent.

...

 But the rights of people with disabilities are not only being violated in Texas. When Florida Governor Ron DeSantis is not bullying LGBTQ+ people in schools or doing his best Donald Trump impersonation by picking a fight with Disney, he is passing a law that criminalizes anyone who delivers or even “physically possesses” more than two vote-by-mail ballots, excluding immediate family members, “including supervised voting at assisted living facilities and nursing home facilities.”


That overwhelmingly and disproportionately affects people with disabilities who often have to stay home either because they are in assisted-living facilities or because of chronic illness. As DeSantis takes pride in thumbing his nose at public health recommendations, plenty of people with disabilities may not be able to go outside for risk of contracting Covid-19, which makes collecting ballots all the more necessary. But in DeSantis’s Florida, both wearing a mask and helping someone cast a ballot is tantamount to communism.

A federal judge recently blocked the law, but Florida is certain to appeal that ruling.

Tuesday, April 19, 2022

Autism, Race, Poverty, and Health

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them.

A release from Drexel University:
The Autism Intervention Research Network on Physical Health (AIR-P), a multi-site collaboration housed within UCLA Health's Department of Medicine since September 2020, and the Health Services Systems Node of AIR-P, based at the Policy and Analytics Center at Drexel University's A.J. Drexel Autism Institute, have released the latest National Autism Indicator's Report using national data to highlight the intersection of autism, poverty, race/ethnicity and their compounding impact on health and health care.

While it is well known that autistic children, children from lower-income households, and children who are Black, Indigenous and people of color (BIPOC) disproportionally experience poor health and health care access, very little is known about how these social identities “intersect” to impact health and health care outcomes. Better understanding the intersectionality of these characteristics will allow for more targeted and tailored interventions to improve health outcomes. The new report finds that autism, poverty and non-white race/ethnicity appear to increase rates of health concerns and care challenges, both individually and in combination.“Discrimination based on race and socioeconomic status is increasingly recognized as an important risk factor to people’s health,” said Alice Kuo, MD, PhD, chief of Medicine-Pediatrics at UCLA and project investigator for the federally-funded AIR-P. “With this report, we can begin to see the devastating combination of autism, poverty and race, an important step in translating the research we do into policy and practice to improve outcomes for people with autism.”

“Findings like these are important because policymakers, decision-makers and advocates use this information to better understand the needs of the autism population and guide the development of targeted programs and services” said Kristy Anderson, PhD, a researcher at the Autism Institute and first author of the report.
Report Highlights

To better understand the economic situation of autistic children, the report provides new estimates about the size and characteristics of the population living in lower-income households overall, and by key subgroups defined by race and ethnicity. According to the report, over half of autistic children lived in low-income households and one in four was living in poverty, a higher rate compared to children without autism spectrum disorder. Children living in low-income households were more likely to be non-white relative to the general population.

Across all income levels, autistic children experienced more challenges than non-autistic children across a wide range of health outcomes. 
  • Both poverty and race/ethnicity independently, and in combination, contributed to health inequities among autistic children.
  • Household income was a very important factor for understanding health disparities for autistic individuals, as it is associated with differences in health status, insurance coverage, medical expenditures and health care access.
  • Higher rates of health-related challenges were evident across all socioeconomic groups.
  • While children living in poverty generally had the highest rates of health and health care challenges regardless of autism status, and rates typically decreased with each level of rising income, there were still notable differences in the relationship between income and health and health care among autistic children versus non-autistic children.
  • Race/ethnicity were also risk factors for poor health and health care outcomes among autistic children.
  • Differences between white and BIPOC children were also present across specific racial/ethnic categories.
  • Racial/ethnic disparities remained, even when grouping data by household income.
The report found that groups who had multiple potential risk factors (poverty, autism, identifying as BIPOC) had higher rates of poor health and health care outcomes. In some cases, the differences observed between income groups were more substantial than the differences associated with autism status, or between white and BIPOC children. The authors argue that efforts to reduce health inequities must be combined with efforts to improve the economic stability of children, especially those with autism and those who are BIPOC. They call for greater attention to programs and policies outside of health care to address health equity among U.S. autistic children.

Monday, April 18, 2022

Antivax Doctors

  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.”

At Vaccine, Timothy Callaghan and colleagues have a study titled "Imperfect messengers? An analysis of vaccine confidence among primary care physicians." Abstract:

Background

Growing narratives emphasize using primary care physicians as leaders in efforts to promote COVID-19 vaccination among the vaccine hesitant. Critically, however, little is known about vaccine confidence among primary care physicians themselves. The objective of this study was to assess both physician confidence that in general, vaccines are safe, effective, and important, as well as physician confidence in each COVID-19 vaccine in the United States.

Methods

We rely on data from a national survey of primary care physicians conducted from May 14-May 25, 2021. We assess the influence of demographic, social, and political factors on physician beliefs that in general, vaccines are safe, effective, and important, as well as physician confidence in the safety of the Moderna, Pfizer, and Johnson & Johnson COVID-19 vaccines.

Results

10.1% of primary care physicians do not agree that, in general, vaccines are safe, 9.3% do not agree they are effective, and 8.3% do not agree they are important. While 68.7% of physicians were ‘very confident’ in the safety of the Moderna vaccine and 72.7% were ‘very confident’ in the safety of the Pfizer vaccine, only 32.1% of physicians were ‘very confident’ in the safety of the Johnson & Johnson COVID-19 vaccine.

Conclusion

A troubling proportion of primary care physicians lack high levels of vaccine confidence. These physicians may not be well positioned to actively promote COVID-19 vaccination even as political and media narratives push physicians to lead this effort. Interventions aimed at improving vaccine confidence among some physicians may be needed so that all physicians can fulfill needed roles as trusted vaccine communicators.

 David Gorski (aka "Orac") at Science-Based Medicine:

As much as we physicians would like to view ourselves as immune to the effects of ideology, emotion, and belief that doesn’t flow from science and reason, we are not. Indeed, it is hubris on our part to think that we are less susceptible to unreason than anyone else, but that doesn’t stop us from thinking that. Worse still, because we as a group tend to think of ourselves as more reasonable and less susceptible to conspiracy theories, misinformation, and disinformation than the average person, when we do fall for them we tend to fall hard. Worse still, because we as a group tend to be highly intelligent, we tend to be very, very good at motivated reasoning indeed. Specifically, we are very skilled at asymmetrically seeking out evidence and arguments that support our preexisting beliefs and finding flaw in evidence and arguments that challenge those beliefs, all while reassuring ourselves that our training as physicians means that our beliefs about medicine are all strictly based on science.

It’s also difficult not to note that physicians as a group have now long been primed to be more willing to accept magical thinking in the form of “complementary and alternative medicine” (CAM), which is now more commonly referred to as “integrative medicine” or “integrative health” It’s an indoctrination process that over the last 30 years has led to a disturbingly high percentage of physicians accepting the validity of rank quackery, including acupuncture and homeopathy and the creation of expensive infrastructure to practice and “study” magic like homeopathy. This led to some embarrassment for a major academic medical center, the Cleveland Clinic, when its director of integrative medicine publicly went full-on antivax three full years before the pandemic hit.

If I sound pessimistic about the likelihood of reversing these attitudes, it’s because I am, at least in the short term. There’s another aphorism—a somewhat sarcastic one—that disproven treatments don’t really disappear from medicine until the last physicians who used them retire or die. Likely, the same will be true with vaccines and physicians doubting them. We can try to educate existing physicians with better science, and doing so likely won’t be entirely ineffective, but it can only go so far. We need to inculcate medical students with critical thinking skills and the ability to evaluate science, but even that is not enough. Medical students need to be taught to recognize misinformation, conspiracy theories, and disinformation, which is something they aren’t taught at all. (In fairness, neither are most college students, and then only if they seek out such learning.) It is true that medical school is arguably too late for this, but it’s the earliest point in physician education that we as a profession control.

Even more importantly, while I welcome physicians who were blissfully unaware of the problem of pseudoscience, quackery, and the disinformation and conspiracy theories used to support them, I also challenge them to actually try to do something about them. I can understand how, not paying attention before the pandemic, you were shocked to learn that about one in ten of your fellow physicians is vaccine-hesitant or even antivax. What I won’t be able to understand is if, now that you know, you don’t try to do anything about it.


Sunday, April 17, 2022

Carrying the Cross

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families, including discrimination.

Justin Reutter at The Pueblo Chieftain:
A southern Colorado man completed an arduous, nine-day journey from Aguilar to Pueblo Friday, walking along service roads on Interstate 25 with a 100-pound cross on his shoulder to bring awareness to the hardships faced by people with disabilities.

"I can't believe we made it," 73-year-old Andy Rybak said, panting to catch his breath as he set the cross down in front of the Cathedral of the Sacred Heart in downtown Pueblo, the final destination of the trip before heading home to Aguilar.

The cross, Rybak said, was a metaphor for the hardships those with developmental disabilities endure.

"The difficulties that disabled adults face are their own crosses," he said.

"This particular week is Holy Week, today is Good Friday, and Sunday is Easter... Any cross that you bear, there's a solution to it if you make the effort to find the solution."

Saturday, April 16, 2022

Autism Families Take Offense at TRICARE

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.


Maggie BenZvi at Coffee or Die:
On April 8, the Facebook page for TRICARE, the government health care program that provides medical insurance for military service members and retirees, posted a message regarding April’s status as a month for awareness and acceptance of autistic people.

“April is #AutismAcceptanceMonth!” the post read. “We can all work to make room for more inclusivity and tolerance with just a little patience, understanding, and education.”

For Holly Duncan, the post was a stab in the heart.

“I don’t ‘tolerate’ my kids,” Duncan told Coffee or Die Magazine in the days after the post went up. “I don’t ‘tolerate’ their autism. I learned to live in their world.”

...

TRICARE is not just some corporate PR department looking for clicks. Rather, as demonstrated by the hundreds of responses to the post and according to parents who spoke to Coffee or Die, TRICARE has failed to deliver needed help to their families.

The reaction to TRICARE’s Facebook post was instant and outraged: scores of military parents who say they have spent hours or even years fighting with TRICARE to get appropriate therapy services covered for their children.

Hundreds of comments quickly piled up on the post.

“Oh, look, useless virtue signaling as they cover less for families. Thanks, TriCare,” wrote a user named Rachel Dawn.

“What a slap in the face #TRICARE with this post!” Kira Barrett-Voelker commented.

“Whoever marketed this mess is an embarrassment,” wrote Kristin Borg.

Duncan, along with Jennifer Bittner, co-chairs the Autism Family Advocacy Committee for Exceptional Families of the Military.

Both women are military spouses, both have two children on the autism spectrum, and both are dismayed by recent TRICARE changes that make receiving those therapies even more difficult.

Friday, April 15, 2022

Hari Srinivasan Wins Soros Fellowshp

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.  
I also discuss the growing number of college students on the spectrum

A release from UC Berkeley:
You can hear Hari Srinivasan’s confident voice in his academic research papers, his Daily Californian newspaper articles and in his poetry and essays. But in person, you’re not likely to hear him speak.

That’s because the UC Berkeley psychology major’s ability to vocalize is severely limited due to regressive autism and a neurological disorder known as oral-motor apraxia.

It closed many doors to him. But not at Berkeley, and certainly not now.

Srinivasan is the first nonspeaking person, or as he puts it, “minimally speaking autistic” to win a prestigious Paul & Daisy Soros Fellowship for New Americans. He will receive $90,000 to fund his Ph.D. studies in neuroscience at Vanderbilt University in Tennessee.

Along with Dave Epstein, a Ph.D. student in computer science at UC Berkeley, Srinivasan is among 30 erudite U.S. undergraduate and graduate students selected this year for the 1998-founded fellowship. The honor recognizes immigrants and children of immigrants “who are poised to make significant contributions to U.S. society, culture or their academic field.”
...
As a Haas Scholar, Srinivasan has conducted research on emotions, among other scholarly pursuits, and will graduate Phi Beta Kappa and Psi Chi. Beyond the campus, he has served on the Interagency Autism Coordinating Committee of the National Institutes of Health, which advises federal policy around autism, and on the boards of several national advocacy nonprofits.

Thursday, April 14, 2022

Ukrainians with Disabilities

 In The Politics of Autism, I discuss international perspectives.  In Ukrainechildren with autism and other disabilities are suffering.

The continued military attacks against Ukraine are putting the lives of an estimated 2.7 million people with disabilities at risk. The Committee on the Rights of Persons with Disabilities today deplored the Russian Federation’s aggression despite repeated calls for a ceasefire and cessation of hostilities. The Committee issued the following statement:
“The Committee is deeply disturbed that the fate of people with disabilities in Ukraine is largely unknown. There are ongoing reports that many people with disabilities, including children, are trapped or abandoned in their homes, residential care institutions and orphanages, with no access to life-sustaining medications, oxygen supplies, food, water, sanitation, support for daily living and other basic facilities.

People with disabilities have limited or no access to emergency information, shelters and safe havens, and many have been separated from their support networks, leaving them unable to respond to the situation and navigate their surroundings.

The continued military attacks leave people with disabilities extremely vulnerable and at grave risk of harm. Women with disabilities are at heightened risk of rape and sexual violence that has been widely reported. Few people with disabilities are reported to be internally displaced or to have reached Ukraine’s borders, indicating that many of them have not been able to flee to safety.

The United Nations Convention on the Rights of Persons with Disabilities requires States to ensure the inclusion of people with disabilities when meeting their obligations under international law, including international humanitarian and human rights law. Ratified by both the Russian Federation and Ukraine, the Convention requires States to take all necessary measures to ensure the protection and safety of people with disabilities in situations of risk, including armed conflict and humanitarian emergencies.

States parties to the Convention also have obligations for cooperation between and among States, and in partnership with representative organisations of people with disabilities and other civil society organizations, to provide humanitarian assistance that is inclusive and accessible.

The Committee urges all States, UN agencies, civil society and other stakeholders involved in humanitarian action to recognise and respond to the pleas and requirements of people with disabilities caught up in the hostilities. Their specific requirements, including according to gender and age, should be identified and included in all responses to the crisis. Ensuring access to humanitarian corridors, inclusion in evacuation and crisis response plans and the provision of accessible emergency information and communications are measures which should be implemented.

Measures need to be taken to ensure that all people with disabilities are accounted for, protected and provided with immediate access to humanitarian aid, taking into account their individual support requirements. Refugees and internally displaced people with disabilities, and people with disabilities in refugee-like situations need to be provided with support tailored to their individual requirements at border crossings, reception and accommodation facilities and to be provided with relocation assistance. Children with disabilities should be provided with individualised support to ensure they are not separated from their families and are protected from institutionalisation and other harmful practices, such as trafficking.

Above all, the Committee calls upon the Russian Federation to immediately end the hostilities and observe and respect the principles of international human rights and humanitarian law.

The Committee will continue to monitor the situation of people with disabilities in the conflict, in close cooperation with organisations of people with disabilities and human rights organisations.”

Wednesday, April 13, 2022

TRICARE Angers Military Families

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Karen Jowers at Military Times:
A Facebook post from Tricare celebrating April as “Autism Acceptance Month” has struck a nerve, with hundreds of military families criticizing the Defense Department for its health care coverage of autism treatment for military families.

Families complained that recent DoD policy changes have resulted in cuts in coverage for autism treatment.

“What a gross post from a group that has made getting services so difficult for hundreds of people,” wrote Meigan Toland, commenting on Tricare’s simple April 8 post.

At last look on April 11, there were 690 comments to the post, which reads: “We can all work to make room for more inclusivity and tolerance with just a little patience, understanding and education. Learn more about Tricare coverage of Autism treatment: tricare.mil/autism.

The post “immediately, albeit unintentionally, highlighted the concerns and limitations with the changes in autism care that many military families encounter,” stated a press release from the organization Exceptional Families of the Military.

Tuesday, April 12, 2022

Autism and Voting Rights

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."

 From Autism Speaks:

For individuals with autism spectrum disorder (ASD), in-person voting may present challenges. Autistic voters may encounter hurdles at local election sites that can discourage them. For example, crowded spaces, long lines and wait times, and sensory impacts from harsh lighting and loud noise levels can be especially difficult. Some people with autism do not communicate verbally but may use a family member to help them navigate and/or a device for augmentative and alternative communication (AAC), which may be unfamiliar to others and questioned by poll workers.

 Matt Vasilogambros at Pew:

Voting rights activists argue the new state restrictions passed in the name of ballot security have made it harder for all voters, including those with disabilities, to cast a mail-in ballot. Indeed, Texas election officials rejected nearly 23,000 mail-in ballots during the March primary—around 13% of total ballots cast. The typical rejection rate in Texas primaries is less than 2%.

Around the country, new voting restrictions driven by former President Donald Trump’s lie about widespread voter fraud have complicated an already difficult process for 38 million disabled voters—a diverse community with differing physical, sensory and cognitive abilities.

When Georgia banned handing out water in voting lines, and Wisconsin banned ballot drop boxes and absentee voting assistance, and Florida limited absentee ballot collection efforts, voters with disabilities faced additional hurdles that have and will continue to prevent many from exercising their constitutional right. Last year, 19 states enacted new voting restrictions, including limits on early and mail-in voting. Several states, including Arizona and Georgia, have added more restrictions this year.

Advocates for voters with disabilities have fought these measures through lawsuits and broad voter education efforts. That has proven challenging, however, as advocates navigate sudden shifts as measures make their way through the judicial system and undergo last-minute legislative changes during the primary season.