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Tuesday, March 14, 2023

Economic Evaluation

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

 At the Journal of Autism and Developmental Disorders, Katherine Pye, Hannah Jackson, Teresa Iacono & Alan Shiell have an article titled "Economic Evaluation of Early Interventions for Autistic Children: A Scoping Review."  The abstract:

Many autistic children access some form of early intervention, but little is known about the value for money of different programs. We completed a scoping review of full economic evaluations of early interventions for autistic children and/or their families. We identified nine studies and reviewed their methods and quality. Most studies involved behavioral interventions. Two were trial-based, and the others used various modelling methods. Clinical measures were often used to infer dependency levels and quality-adjusted life-years. No family-based or negative outcomes were included. Authors acknowledged uncertain treatment effects. We conclude that economic evaluations in this field are sparse, methods vary, and quality is sometimes poor. Economic research is needed alongside longer-term clinical trials, and outcome measurement in this population requires further exploration.

From the article:

The impacts of autism in early childhood lie well beyond the scope of one sector of society (Lavelle et al., 2019). Several authors noted that costs and outcomes are borne by the family unit, healthcare payers, education, social care–and society as a whole (Rodgers et al., 2020; Williamson et al., 2020). This was reflected in the breadth of perspectives taken in the included analyses. Notably, in at least one study (Williamson et al., 2020), cost-effectiveness findings differed according to the perspective that was adopted. Such a difference could determine who bears the costs relating to a program, including whether or not it is publicly funded. Perspective therefore appears important in this field, and researchers should continue to adopt more than one perspective when completing economic analyses.

Behavioral interventions were by far the most researched programs in this review. This finding is unsurprising in light of recent reviews of effectiveness literature (Trembath et al., 2022). Behavioral interventions have been implemented and published for half a century, and their grounding in data-driven methods is well-suited to empirical research. Other (non-behavioral) approaches have some support in the autistic community but lag well behind behavioral programs in terms of academic evidence, and they have rarely been included in economic research to date. Unfortunately, because economic evaluations have often (necessarily) been performed using the data available, they have been limited to behavioral interventions and narrow child outcomes – and not necessarily the neurodiversity affirming programs or outcomes that might be preferred by some members of the autistic community.

Monday, March 13, 2023

Antivaxxers Gain Ground in Montana

 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.

UnfortunatelyRepublican 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. 

Keely Larson at KHN:
In 2021, Montana passed House Bill 702the first of its kind in the nation — which prohibited discrimination based on vaccine status in settings like employment, education, and health care. In effect, it banned private businesses and local governments from requiring employees to be vaccinated, not just against covid-19 but any disease. A federal judge ruled the law unconstitutional in health care settings in a lawsuit filed by hospitals, medical providers, and nurses. Two other lawsuits challenging HB 702, one by private businesses and another by tribal nations, are pending.

This year, lawmakers have introduced proposals to expand vaccine exemptions in schools and change criteria in the workplace and the legal system.

Proponents of the school-related measures include mothers advocating for their parental rights over whether to vaccinate their children; a nurse who maintained that medical choices should be private; and a day care instructor concerned about the connection between vaccines and autism, a claim that has been discredited.

Some experts say those bills, like HB 702 from two years ago, are an overreaction to the fear and anger surrounding the covid pandemic.

Those who promote vaccine exemptions on the grounds of parental rights and individual freedom should be honest about the consequences, said Cason Schmit, an assistant professor at Texas A&M University School of Public Health. Those consequences could include more people sick and dead from preventable diseases, he said.

“We know what the outcomes of these types of laws are,” Schmit said.

Sunday, March 12, 2023

FDA & CDC v. Ladapo

 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.  Misinformation about one vaccine can cause hesitancy about vaccines in general. As a Miani pediatrician has said: "“We are absolutely worried, we’re worried sick all across the country, What has started with the COVID vaccine has now sort of bled over into the traditional vaccinations.”


Associated Press:
U.S. health agencies have sent a letter to Florida’s surgeon general, warning him that his claims about COVID-19 vaccine risks are harmful to the public.

The letter from the U.S. Food and Drug Administration and the Centers for Disease Control and Prevention was sent Friday to Florida Surgeon General Joseph Ladapo. It was a response to a letter Ladapo had written the agencies last month, expressing concerns about what he described as adverse effects from mRNA COVID-19 vaccines.

Ladapo was appointed by Republican Gov. Ron DeSantis in 2021 and has attracted national scrutiny over his close alignment with the governor in opposing COVID-19 vaccine mandates and other health policies embraced by the federal government.

Ladapo last year released guidance recommending against COVID-19 vaccinations for healthy children, contradicting federal public health leaders whose advice says all kids should get the shots.

Misleading people by overstating the risks, or emphasizing the risks without acknowledging the overwhelming benefits, unnecessarily causes vaccine hesitation and puts people at risk of death or serious illness that could have been prevented by timely vaccination. 

Saturday, March 11, 2023

Illinois Neurodiversity Initiative

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

Sharita Forrest at the University of Illinois 
Neurodivergent students who will be incoming freshmen at the University of Illinois Urbana-Champaign in the upcoming fall semester are encouraged to apply to a program geared toward helping them succeed academically, socially and professionally.

The Illinois Neurodiversity Initiative offers a variety of supports and services for students with conditions in which the brain functions, learns and stores information in atypical ways, including autism, dyslexia and attention deficit hyperactivity disorder.

INI is a comprehensive four-year program that supports neurodivergent students in achieving their highest potential in college and beyond, said program creator Jeanne Kramer, the director of The Autism Program of Illinois, the on-campus partner of the statewide TAP Service Network.

INI was launched last fall as a pilot program with an inaugural cohort of 10 students – including some sophomores – who had a variety of majors, including business and engineering.

“INI has been incredibly beneficial for our son,” said a parent of one of the students. “Before this program, we were worried he may not be ready for college. However, INI has helped him make the transition. In addition, INI has taught him a lot about who he is and what his strengths are. We are grateful to the program for helping our son become a successful college student.”

Friday, March 10, 2023

Biden Budget and Disabilities

 In The Politics of Autism, I write about social services, special education and the Individuals with Disabilities Education Act

From a White House budget fact sheet:

Bolsters Support for Children with Disabilities. Every child with a disability should have access to the high-quality early intervention, special education services, and personnel needed to thrive in school and graduate ready for college or a career. The Budget invests $16.8 billion in Individuals with Disabilities Education Act (IDEA) grants to support special education and related services for more than seven million students with disabilities in grades Pre-K through 12, an increase of $2.1 billion above the 2023 enacted level. The Budget also invests $932 million in IDEA Part C grants that support early intervention services for infants and families with disabilities that are critical to supporting children’s developmental and academic outcomes. Increased funding would support States in implementing important reforms to expand enrollment of underserved children, including children of color, children from low-income families, and children living in rural areas.
...
Improves Access to Social Security Services. The Administration is committed to making it easier for people to access the services they rely on, including individuals experiencing homelessness, children with disabilities, and people with mental and intellectual disabilities. The Budget makes investments in the Social Security Administration to decrease customer wait times, simplify the Supplemental Security Income application processes, and increase outreach to people who are difficult to reach. SSA would also continue to modernize its information technology systems to make more services available online and improve 800 Number access for those who call.  

Thursday, March 9, 2023

Louisville Police and People with Disabilities

In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse.

Posts have discussed incidents in the following places:

The Justice Department has a report titled Investigation of the Louisville Metro Police Department and Louisville Metro Government.  It finds that the police and the metro government discriminate against people with behavioral health disabilities when responding to them in crisis.

In some cases, officers’ animosity toward people with behavioral health disabilities may have led to a worsening of their mental health symptoms. According to stakeholders, the treatment faced by these individuals is not uncommon. Stakeholders told us about officers making jokes about mental illness, taunting individuals in crisis, and treating unhoused individuals with “disdain.” Unnecessary and inappropriate LMPD involvement also can also lead to avoidable arrests and incarceration, which carries unique risks for people with behavioral health disabilities.

LMPD officers sometimes arrest people on multiple, redundant criminal charges, even when it is clear that the person is experiencing behavioral health problems. In one incident, officers were dispatched to a white woman who was having thoughts of self-harm, a typical scenario that can often be handled by a behavioral health response such as a mobile crisis team. Upon officers’ arrival, she was clearly experiencing illogical, disorganized thinking and delusions. The officer approached her quickly, closely, and confrontationally. She stated that she wanted to go to prison, spit in the direction of the officer, and, several minutes later, gave the officer a very light push. The officer aggressively handcuffed her and told her that she was “acting like a child” and that “quite a bit is wrong with” her. The officer arrested her and charged her with menacing, giving false identifying information, and disorderly conduct. Officers once again encountered this woman in April 2022 while she was experiencing a crisis and took her to the hospital. During this interaction, one officer stated: “They could have handled that with a social worker, right?”

Similarly, our review of body-worn camera footage revealed that LMPD officers frequently escalate situations rather than de-escalate them. Officers frequently fail to give people experiencing crisis time or space, do not engage in verbal de-escalation for enough time to be successful, and shout orders rather than speaking calmly.77 Additionally, in some videos we witnessed LMPD officers rapidly surrounding individuals experiencing a behavioral health crisis with weapons drawn and failing to designate an officer to be the primary communicator. Both tactics tend to escalate rather than de-escalate the situation. In some cases, officers’ escalation of the behavioral health crisis led to increased safety risks to themselves and the person in crisis and increased the likelihood of the use of force. At other times, officers’ behavior toward people may have created the entire crisis. What we saw was confirmed more broadly by community stakeholders. For example, one service provider stated, “Things don’t end well when LMPD gets involved.”

 

Wednesday, March 8, 2023

The Danger of Measles Is Back

 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 measlesCOVID, flu, and polio.

Mary Kekatos at ABC News reports that the recent Columbus measles outbreaks had its origins in the infamous Wakefield article.

"What our team heard from many parents is that they weren't necessarily against vaccines and their children had other age-appropriate vaccines, but they were specifically putting off the MMR vaccine or waiting as long as they could before they had to get it because of fears it could lead to autism," Kelli Newman, director of public affairs & communications for Columbus Public Health, told ABC News.

What Newman is referencing is a myth that was born out of a now-debunked paper from the U.K. in 1998, which allegedly found that MMR vaccines cause autism.
The paper has since been discredited by health experts, retracted from the journal in which it was published, and its primary author, Andrew Wakefield, lost his medical license. More than a dozen studies have since tried to find a link and have not been able to do so.

However, the damage has been done. Numerous outbreaks of measles have popped up -- in the U.K. and in the U.S. -- over the last two decades, vaccination rates have fallen from their peaks and a recent Gallup poll found 10% of Americans do think vaccines cause autism.

"We eliminated measles from the United States in the year 2000 and since then, measles has become back," Dr. Paul Offit, director of the Vaccine Education Center and an attending physician in division infectious diseases at Children's Hospital of Philadelphia, told ABC News.

He added, "I think the summary of all that for me is that while it's very easy to scare people, it's hard to unscare them."

Maya Yang at The Guardian:

Around 20,000 people may have been exposed to measles at a large religious event in Kentucky, the federal Centers for Disease Control and Prevention and said.

In a statement to the Guardian, the CDC said it was “aware of a confirmed case of measles in an unvaccinated and contagious individual who attended a large religious gathering in Kentucky on 17 and 18 February.

“Large numbers of people that attended the gathering from across Kentucky and from other states and countries may have been exposed.

“An estimated 20,000 people attended the gathering on the days that the patient attended. The Kentucky department for public health is actively working with CDC and clinicians to help identify if there are additional cases.”

The event was a multi-week religious gathering held by Asbury University in Wilmore, Kentucky. The “revival”, which began on campus on 8 February, saw between 10,000 and 20,000 people descend on the 6,000-person town. The event was moved off campus around two weeks later.



Tuesday, March 7, 2023

Judith Heumann and the Disability Rights Movement

“Civil rights” usually referred to the fight against racial segregation.  In several ways, this struggle set the template for other civil rights issues, including disability rights. First, cases such as Brown v. Board of Education demonstrated that disadvantaged groups could gain protections in the courts.  Second, movement leaders found that nonviolent protests could gain public sympathy and put pressure on elected officials. Third, civil rights statutes that helped African Americans would also point to means by which the government could protect other excluded groups. 

Judith Heumann, a founder of the modern disability rights movement, recently passed away.  Sara Luterman at The 19th:
Ari Ne’eman, 35, is a doctoral candidate at Harvard, studying health policy. He co-founded the Autistic Self-Advocacy Network, one of the largest organizations run by and for autistic adults in the United States. He and Heumann were close friends — she gave one of the traditional seven Jewish blessings at his wedding.

“She was someone you could always call and shoot the breeze with, someone who always wanted to know what was going on in your life,” Ne’eman said, noting that her interest was genuine.

“D.C. is a town that is very frequently transactional,” he continued. “Judy wasn’t one to approach relationships from a transactional perspective. She was a connector. She wanted people who wanted similar things to be connected with one another. But it was very easy to talk about nothing specific and leave the conversation feeling very happy.”

He recently interviewed Heumann for a forthcoming book on disability history in the United States. During that interview, he asked Heumann how she wanted to be remembered by historians.

He shared the recording with The 19th, and in it, Heumann stressed that she wanted to be remembered as a “fighter for the rights of disabled people,” but also emphasized the need for the movement to remain dynamic.

“I believe more and more that our movement can’t be isolated. That we need to be part of a changing world. We have to look at issues like global warming and the environment. I think you have to be in a position where you’re ahead of the game and not trying to catch up to a game that keeps changing,” Heumann said.

Monday, March 6, 2023

RFK Jr. Might Run for President

  In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread  And among those diseases could be COVID-19.

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

A leading anti-vaxxer is Robert F. Kennedy, Jr

Thomas Phippen and Paul Steinhauser at Fox News:

Robert F. Kennedy Jr. is considering running for president in 2024, challenging President Biden for the Democratic nomination, and he says his wife approves.

"I am thinking about it yes. I have passed the biggest hurdle, that my wife has greenlighted it," Kennedy told a crowd in New Hampshire on Friday, according to reports.

Kennedy's wife, actress Cheryl Hines, was reportedly attending the speech at the New Hampshire Institute of Politics, which for nearly a quarter-century has been a must stop in the Granite State for potential or actual White House contenders.

Kennedy, the son of the late Sen. Robert F. Kennedy and the nephew of the late President John F. Kennedy, describes himself as a lifelong Democrat and has faced criticism for his activism against the COVID-19 vaccine.

Way more than that.  He was antivax long before COVID, and family members broke with him on the issue:

We stand behind him in his ongoing fight to protect our environment. However, on vaccines he is wrong.

And his and others’ work against vaccines is having heartbreaking consequences. The challenge for public health officials right now is that many people are more afraid of the vaccines than the diseases, because they've been lucky enough to have never seen the diseases and their devastating impact. But that’s not luck; it’s the result of concerted vaccination efforts over many years. We don’t need measles outbreaks to remind us of the value of vaccination.

Kerry Lauerman, Salon, 2011:

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was "convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real."

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running "Deadly Immunity," we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy's exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book "The Panic Virus," further eroded any faith we had in the story's value. We've grown to believe the best reader service is to delete the piece entirely.

"I regret we didn't move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link," says former Salon editor in chief Joan Walsh, now editor at large. "But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do." The story's original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we're proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

 

Sunday, March 5, 2023

How to Fight the Antivaxxers

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread  And among those diseases could be COVID-19.

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

 At The Lancet, Richard Carpiano and colleagues have an article titled "Confronting the evolution and expansion of anti-vaccine activism in the USA in the COVID-19 era."

To address this expanded threat to US public health and security, we recommend three measures consistent with a so-called whole of society approach, 36 in which public health agencies collaborate with diverse (eg, academic, civic, and private sector) stakeholders.

 First, we suggest the development of networked communities capable of reaching the public at the right time, at the right place, and with the right messenger about vaccine-related information—especially to pre-empt and pre-bunk 37 well funded and amplified messages disseminated by the anti-vaccine movement. This action entails a shift in approach for the US public health communication model, from the use of one credible messenger (that is vulnerable to discrediting attacks), to a broad, diverse, and coordinated network of expert messengers and influencers. These stakeholders—including leaders of local, historically marginalised, or faith communities 3839—can simultaneously share similar messages of factual information to their specific audiences. 40 Such an aggregated, coordinated approach makes it difficult for anti-vaccine activist efforts to undermine public trust in messages and lone experts.

Second, we suggest input is solicited from outside the usual public health agencies. Countering the array of expanded efforts by anti-vaccine activists and groups or individuals who influence or monetise disinformation efforts necessitates a wide breadth of expertise. Thus, interdisciplinary and intersectoral collaborations (eg, the Virality Project
10) are essential for developing effective responses. 41
Third, we suggest these networked and coordinated communities are leveraged to counter relevant trends in anti-vaccine efforts. This action will include separating narratives about liberty from anti-vaccine attitudes and mitigating anti-vaccine activist harassment of public health communicators. Separating these narratives requires diverse, trusted voices to stress the value of collective action to secure public health gain and economic security, while being mindful of public concerns for personal liberties that vary in form and intensity across social groups and locations. Activating networks to publicly aid individuals facing harassment will provide victims with valuable credibility and support from professionals and the general population (eg, the Shots Heard Round the World initiative 42).

Saturday, March 4, 2023

Theater Pulls Movie by Pastor Who Says Autism is Demonic

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

Ben Gilliam at WJHL-TV:
A local theater has pulled all screenings of a film that features a pastor who business owners say has compared autism to possession from otherworldly entities.

In a Tuesday Facebook post, Abingdon Cinemall owners said that the complex would not be showing “Come Out in Jesus Name,” a film starring pastor Greg Locke.

According to marketing material for the film, Locke (who plays himself) and a band of comrades set off “the most important awakening in the history of the Christian Church” through the exorcism of demons. After the March 13 screening of “Come Out in Jesus Name”, marketing material encouraged viewers to attend simulcast events featuring Locke and “his fellow demon slayers” to experience “a supernatural mass deliverance… in Jesus name.”

“On the one hand, it is important that our general public be able to see any particular movie if that is their choice,” Cinemall’s post said. “The fact that a movie is controversial, whether for faith or political ideology reasons, has never stopped us from showing it before.”

But according to the post, Locke’s messages surrounding people on the autism spectrum mean it will not be showing in their business.

“On the other hand, one of the preachings of the debated film’s protagonist, Pastor Locke, is that autism spectrum and similar disorders are the result of demonic possession,” the post said. “I have family and friends with children who are autistic. They are all beautiful, loving souls.”

 

The receipts: For a short Christian film that celebrates autistic people, see  "Infinite," by my son Joshua Pitney. It is an official selection of the 2023 International Christian Film & Music Festival.

 

Friday, March 3, 2023

Vaccine Hesitancy Spreads

 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 COVID-19 vaccine is not required in Florida, but experts tell us the anti-COVID vaccine movement has created vaccine hesitancy for the traditional vaccines.

“We often hear from parents, I just want what’s required by the schools, without ever taking into consideration all of these other vaccines which protect their children against other diseases,” said Dr. Lisa Gwynn, a University of Miami pediatrician.

I asked her if the pediatric community is worried that diseases like polio and measles could make a comeback because people are reluctant to get their kids vaccinated.

“We are absolutely worried, we’re worried sick all across the country,” Gwynn said. “What has started with the COVID vaccine has now sort of bled over into the traditional vaccinations.”

The [Miami-Dade] school district is recommending parents trust their pediatricians on the vaccine issue.

Thursday, March 2, 2023

Autism Speaks Honors Grassley

 The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before CongressLast year, the Senate voted to reauthorize Kevin and Avonte's Law and attached it to the National Defense Authorization Act,.

A.J. Taylor at KIOW-FM:

Sen. Chuck Grassley (R-Iowa) received the 2022 “Congressional Leadership Award” this week for his continuous support and advocacy on behalf of individuals with autism. Grassley led the bipartisan effort to reauthorize Kevin and Avonte’s Law with Sen. Amy Klobuchar (D-Minn.). The bill assists communities in locating individuals with autism, Alzheimer’s and other conditions that cause them to wander from safety.

The award, given by Autism Speaks, a non-profit autism awareness organization, is reserved for individuals who have championed steadfast advocacy for individuals with autism and their families. Grassley has prioritized the safety and quality of life for individuals with autism by empowering communities and caregivers to provide adequate care. The award was presented to Grassley by Keith Wargo, the president and CEO of Autism Speaks. Also in attendance was Josh Cobbs, Autism Speaks’ Director of Employment Initiatives, and the Johnson Family from West Des Moines who have long worked to raise awareness for individuals with autism.Senator Grassley receives the Autism Speaks 2022 Congressional Leadership Award. 
I’m humbled to receive this recognition. Legislation like Kevin and Avonte’s law is instrumental in reuniting families, and Autism Speaks is a vital ‘boots on the ground’ organization that facilitates this care. We will continue working to help individuals with autism reach their full potential while honoring those we have lost, like Kevin Curtis Wills of Jefferson, Iowa,” Grassley said.

“Autism Speaks is grateful to Senator Grassley for championing legislation that prioritizes the safety of the autism community. His efforts have led to millions of dollars being delivered to first responders and local organizations in communities across the country to prevent the frightening and sometimes tragic consequences of wandering. We recognize the significance of this in creating a more inclusive world where all individuals with autism can feel supported and understood, and are deeply appreciative,” Wargo said.