Polio Redux

 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.    Examples include measles, COVID, flu ... and polio.

 Ari Daniel at NPR:

Polio is the disease most people thought we had put behind us here in the United States. But earlier this summer, an individual in Rockland County, N.Y., contracted the virus likely from exposure in this country, and ended up paralyzed.

The last time there was community transmission of polio in the U.S. was 1979. The Americas were declared polio free in 1994. Though it's just one case of paralysis at the moment, public health officials — both locally and nationally — are taking the news very seriously.

Wastewater testing and genetic sequencing have shown the virus has been quietly circulating in a couple New York counties since at least May. And it recently was detected in New York City's wastewater. "Even a single case of paralytic polio represents a public health emergency in the United States," the Centers for Disease Control and Prevention declared in a recent report.

Low vaccination rates in Rockland county mean there's a risk of more paralytic cases in that community, the report said. The challenges that health officials are facing while managing the local response in New York may indicate where other spots in the country could soon be headed.

ABA and Private Equity

The Politics of Autism includes an extensive discussion of autism service providers. Since the book's publication, a big change has consisted of a massive increase in private equity investments.

Tara Bannow at STAT:

ABA has long been viewed as the gold standard for kids with autism, so much so that every state mandates insurance coverage. For some families, it is the only option that insurance will cover at all.

But like other pockets of the health care industry, this one has been transformed over the past decade by a flood of investments from private equity firms, drawn by the promise of insurance reimbursement and the rising rate of autism in children across the U.S., now estimated at 1 in 44 kids.

Families and clinicians who once believed fully in the promise of ABA say the financial investors’ fixation on profit has degraded the quality of services kids receive, turning it into the equivalent of fast food therapy. They’ve grown disillusioned with the industry, they told STAT. Some are now questioning whether the therapy is helpful at all, or even harmful, especially after a recent Fortune article detailed an allegation of physical abuse at one chain.

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But several people working in the industry say that private equity, in an effort to save money on time-intensive assessments, often uses “cookie cutter” treatment plans that are at times simply copy-pasted from one client to the next, which they said runs counter to how the therapy is intended to work.

...'

One board-certified behavior analyst — the master’s-level clinicians who supervise ABA technicians — said she was shocked when she started working at Autism Learning Partners in Texas. It was very different from her experience running a small, independent ABA firm there that shut down during the pandemic. She said she felt like a “billing machine, trying to make as much money for private equity as possible.”

Yuh-Line Niou on Autistic Voices

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."  Previous posts have discussed autistic officeholders and political candidates in New York, Georgia, Texas, and Wisconsin.

At the 19th, Sara Luterman interviews New York State Assemblymember Yuh-Line Niou, who is running to represent New York’s 10th District in the House.  She would be its first openly autistic member.

Is there anything about your experience as an autistic person that has informed your policy?

I’ve been shaped by being autistic. I have had to fight to carve out space for myself and others, from a young age, to get a seat at the table. I think that the disabled and neurodiverse communities have been left out of the conversation and policymaking process for a very, very long time. Even when we have people making considerations for us, it’s really different than doing it ourselves.

I think because I’ve had to struggle a little to make sure my needs are being met, I understand better that we should be fighting for something different. That’s why representation matters. That’s why we need to send people with diverse backgrounds to every different leadership role available. That way we can bring our lived experiences to the legislative process. The world we live in is often dominated by hate and exclusion. The only way that we can fight back against that is to be at every level of government. We need to become more visible to ensure our voices are heard.

Closures and Waiting Lists

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

 Dan Goldberg at Politico:

Private agencies that provide services for the intellectually and developmentally disabled have long warned that, without fresh state and federal funding, they would be unable to provide housing and staff support to the growing number of Americans who need care.

Over the last 12 months, the Covid-19 pandemic’s lingering effects and once-in-a-generation inflation have turned dire predictions into sobering truths, and agency directors, who for years hobbled along on shoestring budgets, have done in 2022 what not long ago would have been unthinkable: closed their doors.

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Across the country, more than three-quarters of providers said they’ve turned away referrals, and more than half have discontinued programs, according to a survey from the American Network of Community Options and Resources, an advocacy group.

What happens to the residents? They live with siblings or their elderly parents, some who are themselves in need of care, or they become wards of the state, sent to live in larger and larger facilities, the kind of institutionalized settings the country swore off nearly 50 years ago.

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Most agencies rely on state and federal Medicaid money to pay employees and can’t increase salaries to compete with the retail or food-services industries because Medicaid rates are set by the state. Though that’s always been a challenge, it’s exacerbated during periods of high inflation when wages in other sectors rise and the cost of living increases, making it that much more tempting for employees to take a new job that pays a couple dollars more an hour.

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Turnover rates have climbed to nearly 50 percent nationally, meaning half of all employees need to be replaced every year, a huge expense in time and training.

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Most states were helped by last year’s American Rescue Plan, which temporarily boosted federal matching funds for home- and community-based services. Many providers used the bump to supplement wages or offer pandemic signing bonuses, but that money was never intended to be a permanent fix.

“We’ve offered bonuses, but [employees] know that’s not permanent,” Wilush said. “When Target goes to $24 an hour, it’s really hard to compete with that.”

The Biden administration sought to shore up those programs, proposing $400 billion in new money for home- and community-based services in the Democrats’ social spending package. House Democrats put about $150 billion in their version that passed last year — but it was not included in the reconciliation package that the Senate passed this week, meaning it is unlikely providers will see new money any time soon.

Rep. Maloney Regrets Antivax Past

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

In the past, Rep. Carolyn Maloney embraced that notion, though she later changed her position.

Daniel Marans at Huff Post:

Rep. Carolyn Maloney (D-N.Y.), who is locked in a contentious primary in Manhattan, expressed “regret” for voicing concerns in the past about the potential health effects of childhood vaccines.

In a heated interview on Gotham Gazette reporter Ben Max’s podcast that came out on Monday, Maloney initially defended her record by pointing to her work helping fund COVID-19 vaccine distribution.

“I am vaccinated. My children are vaccinated,” Maloney said. “I have brought millions of vaccines ― over $5 billion ― to the city of New York to support the establishment of vaccines. And I would say that my record is a good one in supporting vaccines.”

But when pressed on her statements about a supposed link between vaccines and autism, as well as legislation she introduced years ago to study the health effects of vaccines, Maloney said she wished she had never said anything to question vaccine safety.

“I regret any statement I ever made asking a question about vaccines,” she said. “There were two bills that I co-sponsored that studied them. I regret asking to study vaccines.”

When asked if Maloney’s campaign wanted to offer any clarification, a campaign spokesperson said her remarks were consistent with what she has said in the past.

The comments nonetheless appear to mark the first time that Maloney has expressed regret of any kind about her past dabbling in vaccine skepticism, and her associations with prominent vaccine skeptics.

Improved College Access in Massachuetts

  In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

A July 28 release from Massachusetts Advocates for Children:

Thank you for your advocacy, your voices were heard! After almost a decade of advocacy, Governor Baker signed the higher education bill which provides inclusive educational opportunities for individuals with Intellectual Disabilities and Autism at state colleges and universities. Young adults with disabilities can now be lifelong learners with their peers!

Many thanks to Gov. Baker, Senate Ways and Means Chair Rodrigues, House Ways and Means Chair Michlewitz, Senate President Spilka, Speaker Mariano, lead sponsors Representative Garballey and Senator Lovely, Joint Committee on Higher Education Co-Chairs Senator Gobi and Representative Rogers, and many other important lawmakers.

This law includes provisions that remove barriers precluding persons with Intellectual Disabilities (ID) and Autism from participating in state colleges and universities. Individuals with ID and autism who cannot pass MCAS [Massachusetts Comprehensive Assessment System] and who do not obtain a regular high school diploma can participate as non-matriculating students in courses with their nondisabled peers and participate in extracurricular activities and other aspects of campus life, with supports and services necessary to facilitate inclusion.

The law also ensures state colleges and universities establish guidelines governing selection of individuals with ID and Autism as well as course selection. Supports and services to facilitate inclusion can be provided by the local school district, the Massachusetts Rehabilitation Commission, Department of Developmental Services, or private funding. The law also codifies the MAICEI grant program and allows the special education IEP Team to consider higher education as an option for students with disabilities.

Download the entire document here

View the new law here

Psychiatry Training

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families.  Sometimes medical professionals lack sufficient training in ASD.

 Natasha Marrus and colleagues have an article at Autism titled "Psychiatry training in autism spectrum disorder and intellectual disability: Ongoing gaps and emerging opportunities."  The abstract:

Autism spectrum disorder and intellectual disability are associated with psychiatric comorbidities, yet a 2009 study of US child and adolescent psychiatry program directors indicated that psychiatry residents receive insufficient training in autism spectrum disorder/intellectual disability. This follow-up study surveyed child and adolescent psychiatry and general psychiatry program directors to assess (1) the current extent of residency training in autism spectrum disorder/ intellectual disability, (2) program director perceptions of educational topics and resident competency in autism spectrum disorder/intellectual disability, and (3) preferred resources to strengthen autism spectrum disorder/intellectual disability training. As in 2009, many child and adolescent psychiatry program directors reported few lecture hours, although current child and adolescent psychiatry residents saw slightly more patients with autism spectrum disorder but not intellectual disability. General psychiatry program directors reported fewer lecture hours in autism spectrum disorder/ intellectual disability and fewer patients with autism spectrum disorder than child and adolescent psychiatry program directors. Both child and adolescent psychiatry and general psychiatry program directors recognized the importance of a range of educational topics in autism spectrum disorder/intellectual disability. Child and adolescent psychiatry program directors reported higher resident competency, and lecture hours and patients seen moderately correlated with resident competency. Program directors indicated that online videos and other resources would help improve autism spectrum disorder/intellectual disability training in their programs. Collectively, these findings suggest minimal improvements in autism spectrum disorder/intellectual disability training over the past decade and highlight the urgent need to advance psychiatry training in this field through dissemination of resources.

From the article:

Notably, literature from other countries demonstrates that insufficient training of psychiatrists in the care of patients with ASD/ID is a global concern, particularly given a pervasive shortage of psychiatrists, with many low-income and middle-income countries having one psychiatrist for every 200,000 people (World Health Organization [WHO], 2013). Recent reviews of training standards in ID for psychiatrists in the European Union (Dias et al., 2020) and overall psychiatry training in Asia (Isaac et al., 2018) have identified multiple training deficits, including wide variance in the rigor and availability of training, with no required ID training in some countries, a lack of unified minimum training standards, a mismatch between the prevalence of a condition and the amount of training, and limited trainee supervision. These disparities were noted to compromise the quality of psychiatric care by contributing to inconsistent and fragmentary treatment across the lifespan. In countries throughout North America, Europe, and Asia, as well as Australia, training deficits have been corroborated by psychiatrists themselves (Edwards et al., 2007; Kaushal et al., 2018; Lunsky et al., 2007; Sajith et al., 2019; Werner et al., 2013), and systemlevel challenges entailing early identification of these patients and the availability of educational resources have also been reported in Brazil and South Africa (Adnams, 2010; Bordini et al., 2015).

 

Underserved Communities and Autism

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

At CNN, Kathleen Toner reports on Illinois autism mom Debra Vines:

“My whole life revolved around finding services for Jason. To be able to get any type of assistance I had to take a train, plane, bus, and a magic carpet to get there,” she said. “Multiple cocktails of medication, changing doctors, changing hospitals. And most of it I did alone because my husband worked nights. I felt totally helpless.”

The support groups that she did find were in affluent communities. Not only was it hard for her to get to without a car, but when she did arrive, she felt out of place.

“I was the only Black woman there, I was the only person that had low income,” she said. “The women – they were great. They were giving me resources. But they would say, ‘They only cost $500.’ And I’m trying to figure how I’m going to get groceries for next week. Imagine how I felt then – even more helpless.”

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In 2007, Vines and her late husband, James Harlan, created The Answer Inc., a nonprofit that supports families in underserved communities who’ve been impacted by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.

“Families are always asking questions, and we want to provide the answers,” she said. “I would say 95% of everything that we provide is a blueprint of what I was missing as a parent.”

Many of those who Vines supports are from Black and Brown communities – a demographic known to face hurdles in the diagnosis and treatment of autism. The CDC reports that Black and Hispanic children are less likely to be identified with the condition, and researchers at Boston University found that Black children are five times less likely to receive early intervention services than white children – due in part to racial bias and cultural stigma.

DOD Extends Tricare Autism Program

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.

Patricia Kime at Military.com:

The Defense Department will extend its program meant to help provide care for military dependents diagnosed with an autism spectrum disorder through 2028 to evaluate its effectiveness, the agency announced Thursday.

In a Federal Register notice, DoD officials said research at the University of Rochester, as well as a newly required review by the National Academies of Sciences, Engineering, and Medicine, need additional time, and they have decided to extend the program past its current Dec. 31, 2023, sunset date to support the studies.

The program, formally known as Tricare Comprehensive Autism Care Demonstration, was started in 2014.

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In March 2021, the program underwent significant changes, with the DoD combining several benefits under one umbrella and broadening services beyond ABA. Under the revised program, Tricare began covering group treatment for autism, if deemed appropriate, and families were assigned a care coordinator to develop care plans and coordinate therapy and treatment.

From its inception, the demonstration project has drawn both support and criticism, with proponents pressing for broad access to early, intense intervention they say contributes significantly to improved quality of life for patients and their families, and the DoD raising concerns about the effectiveness of ABA therapy.

A 2020 DoD report to Congress noted that the current demonstration project "and the delivery of ABA services, is not working for most Tricare beneficiaries."

But a year later, the 2021 report found that 57% of participants in the program made "statistically significant improvements," while 43% showed no improvement or worsening symptoms.

Alex Jones Is An Antivaxxer

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.  

 AJ McDougall at The Daily Beast:

Jones went so far as to take potshots at the families from afar, calling them “pawns” in an episode of his Infowars show that aired Tuesday, according to Media Matters for America. He claimed that Heslin was autistic, saying he thought the father was acting “like somebody on the spectrum.”

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 Someone in the courtroom—it was unclear from the video feed—then brought up Jones’ claim that Heslin was autistic. “Hey, I think I’m autistic too, buddy,” Jones called at the plaintiffs as they filed out of the courtroom.

Five years ago, Julia Belluz wrote at Vox:

Jones has said Oprah Winfrey is trying to reduce the African population by half, that Sesame Street’s new autistic Muppet was designed to normalize an increasingly common disease that’s caused by vaccines, and that the Atlantic and other lefty periodicals are hinting at an imminent decapitation of President Trump.

In this world, Andrew Wakefield, the discredited doctor who falsified data to suggest vaccines are linked to autism, is a “pioneer” and “trailblazer” who just wants to help keep people healthy

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Maloney Takes Hits for Her Antivax Past

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

In the past, Rep. Carolyn Maloney embraced that notion, though she later changed her position.

Alex Maroño Porto at West Side Rag:

The generational strife at the heart of the Democratic primary race for New York’s 12th district congressional seat (which includes the Upper West Side) resonated throughout Tuesday night’s candidate debate.

On the one hand, Democratic Reps. Carolyn Maloney and Jerry Nadler, both elected to Congress in 1992 and reelected every two years since, tried to defend their records and praise the benefits of congressional seniority. On the other hand, challenger Suraj Patel, a 38-year-old with no previous legislative experience, called for a renewal of leadership.

“It’s 2022. It’s time to turn the page on 1992,” Patel said in his opening statement, echoing the issue he’s made the heart of his campaign.

During the 90-minute debate, each of the three Democratic candidates tried to convince voters in the newly-created district, the first in more than fifty years to combine Manhattan’s Upper West and the Upper East sides, to support their platform in the August 23 primary. Issues ranged from how to deal with rising inflation, to bail reform, to the efficacy of vaccines.

As he has throughout the campaign, Patel depicted Maloney as “committedly anti-vaxxer,” citing her co-sponsorship of a 2015 Republican-led bill to study the risk of autism between the vaccinated and the unvaccinated population.

“I support vaccines,” Maloney shot back when challenged again by Patel. “I support the science behind vaccines,” Maloney said, citing a variety of actions she said she had taken to promote vaccines.

Worldwide Antivax Movement

 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.   Even before COVID, they were fighting vaccine mandates and other public health measures.

Dr. Peter Hotez in Nature:

Many countries now face declining immunization rates as a result of anti-vaccine activism1. In the case of the USA, an anti-vaccine movement that began with false assertions linking vaccines to autism accelerated roughly a decade ago in Texas (where I live and work) around a libertarian framework known as health freedom2. At present, many conservative elected leaders in the US House of Representatives actively promote this health freedom anti-vaccine agenda, as do several US senators, sitting governors and federal judges3. Far-right extremist groups such as the Proud Boys march at anti-vaccine rallies.

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US anti-vaccine activism under the banner of health freedom (also referred to as medical freedom) has produced tragic and even deadly consequences. The loss of life has been massive. Since 1 May 2021, when President Biden’s administration announced that COVID-19 vaccines would become widely and freely available, at least 200,000 unvaccinated Americans have lost their lives potentially needlessly because they refused to have a COVID immunization. Analyses from Charles Gaba and organizations such as the Kaiser Family Foundation and the New York Times have shown that those COVID-19 deaths or low vaccination rates occurred overwhelmingly along a partisan divide and in Republican-majority states, with the highest death rates among US counties that voted heavily for the 2020 re-election of President Trump. A new phrase known as ‘red COVID’ has been invoked to report on this strong partisan divide in vaccine acceptance.

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Antivax Movement Morphs

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.  

 Sheera Frenkel at NYT:

Nearly half of Americans oppose masking and a similar share is against vaccine mandates for schoolchildren, polls show. But what is obscured in those numbers is the intensity with which some parents have embraced these views. While they once described themselves as Republicans or Democrats, they now identify as independents who plan to vote based solely on vaccine policies.

Their transformation injects an unpredictable element into November’s midterm elections. Fueled by a sense of righteousness after Covid vaccine and mask mandates ended, many of these parents have become increasingly dogmatic, convinced that unless they act, new mandates will be passed after the midterms.

To back up their beliefs, some have organized rallies and disrupted local school board meetings. Others are raising money for anti-mask and anti-vaccine candidates like J.D. Vance, the Republican nominee for Senate in Ohio; Reinette Senum, an independent running for governor in California; and Rob Astorino, a Republican gubernatorial candidate in New York.

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Renée DiResta, a research manager at the Stanford Internet Observatory who has studied anti-vaccine activism, said the movement had indoctrinated parents into feeling “like they are part of their community, and that community supports specific candidates or policies.”

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Activists posted statistics about Covid vaccines in those Facebook groups. Often that information came from the Vaccine Adverse Event Reporting System, a database maintained by the C.D.C. and the Food and Drug Administration, which allows anyone to submit data. The C.D.C. has warned that the database “cannot prove that a vaccine caused a problem.”

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Another post titled “If you want to really know what is going on, read this” linked to an article that falsely claimed vaccines could leave children sterile. The article was originally posted to a Facebook group named Children’s Health Defense, which supports an organization founded and chaired by the anti-vaccine activist Robert F. Kennedy Jr.

That tipped some parents into repudiating every vaccine, from chickenpox to hepatitis, and against vaccine mandates of any kind. A right to self-determination so that parents could decide what vaccines their children took was paramount.