IDEA Funding Formulas

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

 Tammy Kolbe, Elizabeth Dhuey, and Sara Menlove Doutre, "More money is not enough: The case for reconsidering federal special education funding formulas," Brookings, October 3, 2022:

[A]midst anticipation for increased federal funding for special education, another important consideration has largely been overlooked: The formula used to determine how IDEA funds are allocated to states. IDEA’s funding formula is one of the law’s most critical components. Since the law’s inception, Congress has attempted to allocate IDEA appropriations to states according to each state’s share of children needing special education services.

That said, there are concerns that IDEA’s existing formula falls short of meeting policymakers’ expectations. In our recent work, we evaluated whether IDEA’s existing formula equitably distributes federal funding for special education among states and what will happen if the current formula is used to distribute potential future increases in IDEA appropriations. What we found is concerning.

The existing formula generates substantial differences among states in the amount of federal funding available to pay for a child’s special education services, and these differences have grown over time. For FY2020, the difference in IDEA grant amounts between the states at the top and bottom of the distribution was about $1,442 per child; Wyoming received about $2,826 for each child receiving special education and Nevada received $1,384 per child (see Figure 1). To put this difference in context, for that year federal IDEA funding covered about 23% of the national average additional cost of educating a student with a disability in Wyoming, whereas federal dollars covered about 11% of additional spending in Nevada.

Right-Wing Kooks Praise RFK Jr.

 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 presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Alex Seitz-Ward at NBC:

Former Trump adviser Steve Bannon said he received a “standing ovation” from a “hardcore MAGA” crowd at a recent speaking engagement for floating the idea of a bipartisan Trump-Kennedy ticket. “Bobby Kennedy would be, I think, an excellent choice for President Trump to consider” as a running mate, Bannon said this week on his War Room show.

Roger Stone, the former Richard Nixon aide who was one of Trump’s early political advisers, called Trump-Kennedy a “dream ticket” on the news program Real America.

While Stone said he disagrees with Kennedy on some issues, he likes the candidate's opposition to “globalists” and skepticism of continued U.S. support for Ukraine against Russia. “On those geopolitical ideas, he makes a lot of sense. In fact, he sounds a lot like Donald Trump,” Stone said.

Michael Flynn, Trump’s former national security adviser who has promoted the QAnon conspiracy theory, on Friday tweeted, “I am really starting to like this presidential candidate’s attitude.”

Turning Point USA head Charlie Kirk on April 6 called Kennedy “one of the most articulate and thoughtful political activists going after the administrative state.”

A day earlier, conservative talk show host Steve Deace posted a picture with Kennedy on Twitter saying, “As long as he doesn’t go trans, a man with high character and courage like RFK Jr will be tempting.” And QAnon influencer Jordan Sather posted to Trump’s Truth Social platform saying he hopes to see “RFK Jr. redpilling the hell out of libs on the vaccine.”

..
An environmental lawyer by trade, Kennedy has devoted much of his adult life to attacking what he views as an unholy alliance between the pharmaceutical industry, the government and the media to promote vaccinations, which he claims are responsible for autism and other chronic diseases, despite the overwhelming scientific evidence against that theory.

...

I don’t agree with Robert F. Kennedy Jr. on some topics, but he’s a man of integrity that fights fluoride and poison shots and fentanyl and everything else. He’s a good man,” Alex Jones, the right-wing conspiracy theorist said on his Infowars broadcast this month. “He’s got a lot of guts, and I really support him for the Democratic nomination.”

Debt Bill and Disabilities

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

A March release from Drexel University:

In the latest edition of the National Autism Indicators Report series, researchers at Drexel University’s A.J. Drexel Autism Institute explore how autistic individuals use Medicaid and how their service use changes across the lifespan – from infants to older adults – using data from the Centers for Medicaid and Medicare Services (CMS) from 2008-2016.

“Medicaid is a critical public benefit for an increasing number of autistic people,” said Anne Roux, a research scientist and director of the Policy Impact Project at the Autism Institute. “We found the number of autistic people enrolled in Medicaid tripled between 2008 and 2016 to nearly 600,000. Almost 70% of the enrollees were children.”

 A Wednesday release from The Arc:

Today, the U.S. House of Representatives passed H.R. 2811, The Limit, Save, Grow Act of 2023, which includes radical new work requirements for Medicaid enrollees in exchange for lifting the debt ceiling. This Medicaid benefit test will harmfully transform our country’s primary health care for people with disabilities, deepen health inequities experienced by people with disabilities, and do little to boost employment. The Arc urges Senators and the President to reject this extreme benefit test and other harmful cuts contained in the bill as they work towards a deal to lift the debt ceiling.

The bill requires Medicaid beneficiaries to meet an 80-hour per month work-reporting requirement unless they meet an exemption. This doesn’t just apply to new enrollees or people eligible under the Affordable Care Act’s Medicaid expansion provisions – it applies to everyone ages 19-55 receiving Medicaid. Millions of enrollees will be forced to go through an obstacle course and navigate complicated red tape to keep coverage, including many who rely on home and community-based service waivers and Supplemental Security Income. The Congressional Budget Office estimates that 1.5 million adults will lose federal funding for their Medicaid coverage and the bill will cut Medicaid by an estimated $109 billion over the next decade.

“Medicaid is a lifeline for people with disabilities,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “This policy not only undermines their access to life-sustaining health care and community living, but it also undermines their inclusion in the workforce. Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities, over 45% of which have a co-occurring health condition. In addition, many of the exemptions for the rule are vague and highly subject to the stigmas and biases of those with the power to determine eligibility. Millions of people who rely on these safety net programs will fall through the cracks in a system that is already difficult to grasp – and these changes will compound that problem.”

People with disabilities would need a doctor or other medical professional to deem them “physically or mentally unfit for employment,” which is not a standardized disability determination. Many people with disabilities already face barriers to accessing health care and discrimination from providers, which, if this legislation passes, would now come with the risk of losing Medicaid coverage. There is also an exception for caregivers who give care to an “incapacitated person.” This terminology is vague, subjective, crude, and could extremely limit the definition of caregivers.

All of this chaos and administrative burden comes at the misguided hope that this new benefit test will boost employment opportunities and outcomes. In fact, most adults that utilize Medicaid are working, the majority of which are working full-time. Those who are not working or are working part-time face barriers to employment, such as having a disability or caregiving responsibilities. What’s more, Arkansas had a short-lived work requirement for Medicaid back in 2018, which failed to increase employment and caused 18,000 people to lose coverage. The reality is that having Medicaid supports people’s ability to join the workforce, not hinders it.

The proposal comes at a time when:states are expected to drop millions of beneficiaries due to the end of the Medicaid continuous coverage requirement during the COVID-19 pandemic;
over 650,000 people with disabilities desperately wait for home and community-based services, some of them for years;
and the nation is experiencing major labor shortages in health and long-term care.

Congress should be focusing on ways to expand access to services, not on cutting Medicaid.

 

RFK and DeSantis: The Antivax Candidates

 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 presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Vera Bergengruen at Time and Yahoo:

While Kennedy did not directly mention vaccines in his announcement, it was clear that was not necessary for his most enthusiastic supporters. “This is the candidate for vaccine truth that promises to dismantle the vaccine deep state!” one popular right-wing anti-vaccine Telegram channel told its 81,000 followers on April 16, encouraging them to attend his announcement in Boston. “RFK may not be perfect but we know he’d take a wrecking ball to the pharmaceutical industry and vaccines,” one poster said on a popular pro-Trump forum. “Even Trump may not do that.”

Five days after launching his campaign, Kennedy alleged on Twitter that Fox News had let go of Tucker Carlson because the right-wing host had claimed “that the TV networks pushed a deadly and ineffective vaccine to please their Pharma advertisers…Fox just demonstrated the terrifying power of Big Pharma.”

But Kennedy is not the only presidential candidate employing anti-vaccine rhetoric. The pandemic and resistance to the vaccine mandates that followed provided a surge of momentum to the movement, and spurred a partisan split that turned support of vaccines into a political litmus test. While vaccine skepticism has been limited to longshots like Kennedy on the left—President Joe Biden is widely expected to coast to the Democratic nomination—more prominent contenders on the right appear to be courting it.

“I think Robert Kennedy Jr. is in a class by himself, because a huge portion of what he works on is opposition to vaccination,” says Joshua Sharfstein, a public health professor at Johns Hopkins. “I don’t think he’s credible within his own family, let alone you know, as a national speaker on the topic … More concerning is the Florida governor.”

Florida Governor Ron DeSantis, who has fallen in polls recently but is still expected to challenge former President Donald Trump for the 2024 GOP nomination, has raised questions about the safety of vaccines in Florida. In December, DeSantis asked the Florida Supreme Court to empanel a grand jury to investigate “wrongdoing” tied to COVID-19 vaccines. “I think people want the truth that I think people want accountability,” DeSantis said at the time. “You need to have a thorough investigation into what’s happened with the shots.”

Dylan Scott at Vox:

A report this month from the Tampa Bay Time revealed that DeSantis’s state surgeon general had altered scientific data in order to justify his official position that young men should not receive the Covid-19 vaccine. DeSantis, who has criticized former President Donald Trump for deferring to public health officials like Anthony Fauci, has embraced conspiratorial talking points. He has suggested profits and not public health drove the Covid vaccine campaign and convened a state grand jury to investigate any “misconduct” on the part of drug manufacturers and the scientific community related to the vaccines.

 

Zoe Gross Discusses Autism

  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

Zoe Gross, Director of Advocacy at Autistic Self Advocacy Network recently spoke on C-SPAN about federal and state efforts to help assist people with autism. 

.

RFK Jr., Vaccines and Media Coverage

 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 presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

At STAT, Leah Russin makes suggestions for covering antivaxxers such as RFK Jr.

Avoid false balance. Treat anti-vaccine disinformation like flat-Earth manifestos. Get a few quotes from public health experts refuting the candidate’s statements and move on. Don’t elevate the falsehoods by also quoting someone else who subscribes to them. Where science is uncertain, journalists should rely on experts to explain the risks and unknowns, as well as the risk of not adopting a public health measure.

Take care with headlines. Recitations of falsehoods — whether or not they pull in the eyeballs — are a dangerous way of perpetuating misinformation. We all know that many people won’t actually read the article, so they only absorb the headline. Careful coverage may not get as many clicks, but it should ensure the public comes away with a full understanding of both the candidate and the science. A good headline will highlight the falsehood, like this one, while a bad headline, like this one, baldly repeats the false claim, leaving the article to do the harder work of context and correction.

Only allow debates on policy. For example, we can reasonably debate whether vaccines should be required for school or public health workers, what types of exemptions should be available, and how rigorously they should be enforced. It is appropriate to consider the relative importance of privacy, liberty, and public health as part of a policy discussion on when and where vaccines should be required or merely encouraged. But there should be no debate about what the evidence about vaccines’ safety and effectiveness actually shows. There is no “both sides” on the science.

Report: Autistic Jewish Student Had Swastika Carved in His Back

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. 

 Minyvonne Burke at NBC:

The FBI said it is in contact with authorities in Las Vegas after a woman said her Jewish son, who has autism, had a swastika carved onto his back.

"We are aware of the incident and are in regular contact with local authorities. If during the local investigation, information comes to light of a potential federal civil rights violation, the FBI is prepared to investigate," the agency said in a statement Saturday.

The woman told COLlive.com that her son, a student at Clark High School, came home on March 9 with the hate symbol etched into his skin. The woman, who told the outlet that she wanted to remain anonymous, said the 17-year-old is nonverbal, uses a service dog and has someone to assist him at all times.

"My son is the only student I know of who wears a Kippah at the school," she told the outlet, referring to the cap worn by Jewish men and boys.

The mother said she emailed the school about what happened and then filed a report on March 13 with the Clark County School District Police. She also alleged that her son's service dog's equipment bag had been tampered with, COLlive.com reports.

The school and the district police could not immediately be reached by NBC News on Saturday. School officials told the Las Vegas Review-Journal in a statement that police conducted an investigation which included interviewing staff and reviewing camera footage and found "no evidence that would indicate the origin of the injuries."

ASF Lobbyist Argues for "Profound Autism" Designation

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Craig Snyder, former chief of staff to Sen. Arlen Specter and lobbyist for the Children’s Health Act of 2000 and the Combating Autism Act of 2006, at The Hill: 

By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.

Kids who can’t speak, many with severe intellectual disability and serious physical health problems, and their families, are aggregated in popular culture with celebrities who sometimes self-diagnose as autistic —even as they suffer undiagnosed physical pain (for example, from GI disease) or seizures, often “treated” with completely inappropriate anti-psychotic medications and leather restraints, confronted by and harmed by police without training in their special needs, or as they wander into harm’s way or accidental deaths.

If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.

...

The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.

The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.

Profound Autism and Prevalance

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Mike Stobbe at AP:

As autism diagnoses become increasingly common, health officials have wondered how many U.S. kids have relatively mild symptoms and how many have more serious symptoms, such as very low IQ and inability to speak.

A first-of-its-kind study released Wednesday shows the rate of such “profound” autism is rising, though far slower than milder autism cases.

“It’s very important to know how many people have profound autism so that we can properly prepare for their needs,” including more health and education services, said Alison Singer, executive director of the advocacy and research group Autism Science Foundation.

At Public Health Reports,  Michelle M. Hughes and colleagues have an article titled "The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016

Abstract

Objectives:

Autism spectrum disorder (autism) is a heterogeneous condition that poses challenges in describing the needs of individuals with autism and making prognoses about future outcomes. We applied a newly proposed definition of profound autism to surveillance data to estimate the percentage of children with autism who have profound autism and describe their sociodemographic and clinical characteristics.

Methods:

We analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20 135 children aged 8 years with autism during 2000-2016. Children were classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50.

Results:

The percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non–profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children.

Conclusions:

As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.

From the article:

Among the 20 135 children aged 8 years with autism in the 2000-2016 surveillance years, approximately 27% overall met the case definition of profound autism. In 2016, the most recent surveillance year, the prevalence of profound autism was 1 in 218 children aged 8 years. To our knowledge, this study is the first US population-based study quantifying the prevalence and describing the characteristics of the population with profound autism. This analysis used data from a long-running surveillance system for autism in the United States, allowing profound autism to be quantified in a well-described cohort of school-aged children. It is important to identify these children because they are underrepresented in autism research and intervention studies and generally have the greatest need for services and supports. Children with profound autism may have considerable medical complexity and likely may not be able to live independently or perform tasks of daily living as they age.15,16 It is essential that policies, programs, and resources are tailored to the profound autism population across the life span to ensure their needs are met.

While the prevalence of both profound and non–profound autism increased over time (2000-2016), the increase was greater for non–profound autism (from 1 in 254 to 1 in 70 children aged 8 years) than for profound autism (from 1 in 373 to 1 in 218 children aged 8 years); while attenuated, this trend remained when we used the 2002 study year as the starting reference point. This finding suggests that the composition of the identified autism population changed as the overall identified autism prevalence increased.

 

RFK Jr. Officially Announces

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. 

He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Trip Gabriel at NYT:

More than half a century after his father sought the White House to end a calamitous war in Vietnam and to salve the country’s racial wounds, Robert F. Kennedy Jr. announced a presidential campaign on Wednesday built on re-litigating Covid-19 shutdowns and shaking Americans’ faith in science.

,,,

While polls show that up to half of Democrats want someone besides Mr. Biden as their 2024 nominee, no party leader has stepped up with a challenge, and past opponents have rallied to the president’s side. Mr. Kennedy is the latest in a history of fringe presidential aspirants from both parties who run to bring attention to a cause, or to themselves.

For Mr. Kennedy, that cause is vaccine skepticism, which he cloaked in terms of truth-seeking and free speech, a crusade that in the past led him to falsely link childhood vaccines to autism. At the height of the Covid-19 pandemic, he sought to undermine public trust in vaccines, comparing government efforts to impose mandates in some places to “Hitler’s Germany.” Both Facebook and Instagram took down accounts of a group he runs for spreading medical misinformation.

Autism Society Applauds Biden Disability Actions

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

 From the Autism Society:

Affordable, accessible, quality child care and respite services are essential to give families the support they need. The Autism Society prioritizes advocating for additional funding for Medicaid-funded home and community-based services.

“Our community-based service system is in crisis. Many Autistic individuals want to live at home or in their community with support, but funding has not kept up with the needs of families,” stated Christopher Banks, President and CEO of the Autism Society of America. “Parents often care for their adult children until they need support themselves.”

The bipartisan Better Care Better Jobs Act, introduced in both the House and Senate, would increase access to personal care services, family supports, community behavioral health services and expand eligibility requirements. It would also facilitate greater coordination with employment, housing and transportation supports. An independent analysis estimates the bill would provide enough funding to enable 3.2 million more individuals to receive services.

The President’s Budget also includes $150 billion over the next decade to improve and expand Medicaid home care services—making it easier for people with disabilities to live, work, and participate in their communities.

Banks continued, “We applaud President Biden’s actions and urge Congress to pass the Better Care Better Jobs Act to support families with disabilities.”

Next week, the Autism Society is co-sponsoring the Disability Policy Seminar, along with several other major disability organizations. The annual seminar includes a day on the Hill where people with disabilities, family members, and professionals will urge Congress to support the President’s Budget and legislation, such as the Better Care Better Jobs Act, to address waiting lists and raise wages for direct care workers.

Duke and Stem Cells

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

Anna Merlan at Vice:

For several years, parents of autistic children have paid between $10,000 and $15,000 to have their children undergo unproven stem cell and cord blood treatments at Duke University, through what’s called an expanded access program, or EAP. That practice has attracted criticism from observers and ethicists in the stem cell field, who have asked why Duke was charging money for a service when its own clinical trials have not been very promising. In recent months, Duke has sent letters informing parents that this program is no longer available to autistic children—raising new questions about what those parents, who’d been led to believe the treatment might be a panacea for their kids, will do instead.

One of the more urgent questions is whether parents who can’t access the treatment though Duke will instead go to a for-profit partner with ties to the school. That would be Cryo-Cell International, which previously announced that it had entered into a licensing agreement with Duke allowing it to offer the same stem cell infusions in private, for-profit clinics the company has said it plans to begin opening this year. (Duke previously told Motherboard that “the licensing agreement does not grant Cryo-Cell the use of Duke’s EAP for the treatment of patients at Cryo-Cell, but will allow Cryo-Cell to develop its own cell therapy program.”)

Kennedys v. RFK Jr.

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. 

He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Edward-Isaac Dovere at CNN reports on the Kennedy family's attitude toward RFK Jr.'s presidential candidacy.

Robert F. Kennedy Jr.’s campaign challenging President Joe Biden for the Democratic nomination – set to be announced Wednesday in Boston – is too much for a family that defined the modern Democratic Party. They’re frustrated, sad and completely opposed.

They say they love him. They use words like “heartbroken” and “tragic.”

It’s the vaccine skepticism, which includes a book about “The Real Anthony Fauci” and saying Anne Frank was better off than Americans under supposed vaccine mandates because she could at least hide from the Nazis. It’s insisting that Sirhan Sirhan didn’t actually shoot Kennedy’s father, and breaking with many in the family years ago to argue for the assassin’s parole. Now, it’s going up against a president whose administration is stocked with Kennedys in prominent positions and who has decades of personal and emotional connections to multiple members of the family.

...
“Which brother?” Chris Kennedy, a former gubernatorial candidate in Illinois, joked when asked by CNN about his thoughts on his brother’s campaign.

“This is a difficult situation for me. I love my older brother Bobby. He has extraordinary charisma and is a very gifted speaker,” Rory Kennedy, the filmmaker and youngest child of Robert F. Kennedy, told CNN. “I admire his past work as an environmentalist – because of him, we can swim in the Hudson. But due to a wide range of Bobby’s positions, I’m supporting President Biden.”

“I prefer not to talk,” texted Kathleen Kennedy Townsend, the former Maryland lieutenant governor who’s now an adviser on retirement at the Labor Department, when asked about the frustration within the family about her brother’s run.

Asperger and Other Labels Are Controversial

From the preface to The Politics of Autism.

A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

The term "Asperger Syndrome" is falling into disuse because of changes in the DSM and revelations that Hans Asperger was a Nazi collaborator.

 Zoë Corbyn at The Guardian:

Autistic Not Weird’s [Chris] Bonnello periodically surveys the autistic community on a range of autism-related issues (his 2022 survey had more than 11,000 respondents, mostly from the UK and US, about two-thirds of whom were autistic). While in 2018 about 51% said they used Asperger’s syndrome in relation to their own personal situation or when discussing autism, in 2022 it had plummeted to under 19%. The Hans Asperger revelations occurred between the surveys, notes Bonnello, and while it isn’t personally why he moved away from Asperger’s, it was likely a big driver.

...

Yet while many self-advocates now embrace life on the spectrum, there are different views among experts about whether things are working quite as they should, and how to fix them. One issue is whether people who would have been diagnosed with Asperger’s previously are falling through the cracks under the new system. Fred Volkmar, a professor of child psychiatry at Yale University, led the group that first introduced Asperger’s under DSM-IV. (He was originally on the DSM-5 group but resigned over process issues.) A specific problem Volkmar still sees a decade on is that the definition of ASD was effectively made more stringent under DSM-5 – and people at the margins, who might have qualified for Asperger’s or atypical autism, are missing out on a diagnosis as a result. Those people need identifying too so they can get support. The reduction rate in diagnosis under DSM-5 for those with Asperger profiles was recently estimated, based on a meta-analysis of studies, to amount to about 23% – though Volkmar thinks the number is likely to be higher.

Yet Catherine Lord, a professor of psychiatry at UCLA, who was on the DSM-5 group, disputes that a significant minority of people are getting lost. The reality of DSM-5, she says, is that it simply just isn’t very specific. Symptoms, for example, don’t even have to be current (they can be historic). “Almost all of us, by history, would meet some of the criteria for autism,” she says.

“If people are slipping through the cracks, then other people are slipping in,” says Francesca Happé. Diagnosis rates have increased exponentially over the past 20 years in the UK, she says, with the biggest increases in women and people over the age of 19. And the best interpretation isn’t that DSM-5 has necessarily changed much but that diagnosis is being more widely applied and there’s a historical backlog (in the past, adult diagnosis was uncommon and it was seldom considered that women could have Asperger’s or autism)

Los Angeles Sheriff Training About Autism

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:

• Orlando
• Richmond, VA
• Jackson County, KS
• Glynn County, GA
• Douglas County, CO
• Graymoor-Devondale, KY
• Vacaville, CA
• Metrairie, LA
• Salt Lake City
• Statesville, NC
• Buckeye, AZ

This list is not exhaustive.  Indeed, it does not even scratch the surface.

Police training could be helpful, but we also need programs to evaluate the implementation and effectiveness of the training.

Jessica DeNova at KABC-TV:

Some members of the Los Angeles County Sheriff's Department participated in an immersive experience to prepare themselves to better handle people with autism and developmental disabilities when on a call for service.

The training was put together by the city of Industry, along with Kate Movius of Autism Interaction Solutions. Movius has first-hand experience because her own son is on the spectrum.

"If there's one thing you take away from the training today it is that you take your time, if it's tactically permissible, and safe for you, to slow way down," said Movius.

Kits that included items such as noise-canceling ear muffs and white boards were given to participants to help them better communicate with someone with autism.

People living with autism also spoke and gave testimonials on their interactions with law enforcement.