Disability Representation

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. Employment remains a challenge.

Andrew Pulrang at Forbes:

Every casting of a model with a disability, especially a visible one, sets a precedent for hiring more. This increases the chances that people with disabilities might realistically make a successful career in fashion modeling. It’s a pretty simple equation, though of course not very large-scale in an industry as relatively small as modeling.

The same hope is more significant in other professions where people with disabilities have traditionally been seen as longshots, niche performers, or incompatible – like medicine, acting, and sports. The hope for disabled people is that one or two high-profile disabled people can generate more opportunities for others, including possibly themselves.

Seeing disabled people in jobs and activities that seem to contradict old, ableist ideas about disability can help change those ideas. Candace Owens’ assumption that the sight of a woman in a wheelchair is unattractive and therefore incompatible with modeling is a case in point. And deliberately hiring and featuring disabled models is a simple, direct way of demonstrating that disability is entirely compatible with beauty and sex appeal.

Big Geographic Differences in ASD Prevalence

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Jessica Bradshaw and colleagues have an article at The Journal of Autism and Developmental Disorders titled "County-Level Prevalence Estimates of Autism Spectrum Disorder in Children in the United States"
Abstract:

Prevalence estimates of autism spectrum disorder (ASD) point to geographic and socioeconomic disparities in identification and diagnosis. Estimating national prevalence rates can limit understanding of local disparities, especially in rural areas where disproportionately higher rates of poverty and decreased healthcare access exist. Using a small area estimation approach from the 2016–2018 National Survey of Children’s Health (N = 70,913), we identified geographic differences in ASD prevalence, ranging from 4.38% in the Mid-Atlantic to 2.71% in the West South-Central region. Cluster analyses revealed “hot spots” in parts of the Southeast, East coast, and Northeast. This geographic clustering of prevalence estimates suggests that local or state-level differences in policies, service accessibility, and sociodemographics may play an important role in identification and diagnosis of ASD.

From the article:

States differ significantly in services covered by private insurance mandates, timing of adoption of insurance mandates, and availability of service providers, all unique factors that may impact whether and when parents seek an ASD diagnosis (Choi et al., 2020; Johnson et al., 2014). While statewide mandates certainly contribute to regional differences, county and neighborhood resource allocation and access play an important role in regional differences. Indeed, large variation exists even within small, relatively densely populated states (Shenouda et al., 2022). For example, regional hotspots observed in this study may be explained in part by clusters of high-resource areas within states, which can be examined using proximity to high-volume medical or autism centers. In the current study, this may be the case where some hotspots include areas with a high density of university-based medical research centers with autism diagnostic programs in the Northeast (including New York, NY, New Haven, CT, Providence, RI, Boston, MA), the Southeast (Atlanta, GA; Charleston, SC), and parts of Southern California (San Diego, Los Angeles). In addition, the observed contrast in ASD prevalence between hotspot regions in Southern California (San Diego/Los Angeles) and cold spot regions Northern California surrounding San Francisco (e.g., San Francisco, Marin) partially align with recent findings of increasing ASD diagnoses among white children in middle income counties, including San Diego, Los Angeles and decreasing ASD diagnoses among white children in wealthier counties surrounding San Francisco (e.g., Marin) (Nevison & Parker, 2020). These data highlight the importance of county- and region-specific examinations of ASD resources and suggest a combination of sociodemographic and geographic features that may serve as facilitators and barriers to ASD diagnosis. Future research should explore the intersection of ASD prevalence with neighborhood sociodemographics as well as the co-location of high or low ASD prevalence and the corresponding high or low density of healthcare providers (e.g., pediatricians, behavioral health providers, etc.) to determine the potential relationship with local access to care.

Improving Medicaid Access

 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.

An April 27 release from HHS:

The Centers for Medicare & Medicaid Services (CMS) today unveiled two notices of proposed rulemaking (NPRMs), Ensuring Access to Medicaid Services (Access NPRM) and Managed Care Access, Finance, and Quality (Managed Care NPRM), that together would further strengthen access to and quality of care across Medicaid and the Children’s Health Insurance Program (CHIP), the nation’s largest health coverage programs. These rules build on Medicaid’s already strong foundation as an essential program for millions of families and individuals, especially children, pregnant people, older adults, and people with disabilities.

If adopted as proposed, the rules would establish historic national standards for access to care regardless of whether that care is provided through managed care plans or directly by states through fee-for-service (FFS). Specifically, they would establish access standards through Medicaid or CHIP managed care plans as well as transparency for Medicaid payment rates to providers, including hourly rates and compensation for certain direct care workers. The rules would also establish other access standards for transparency and accountability, and empower beneficiary choice.

...

Covering nearly one in four Americans and over half of all children in the country, Medicaid is the single largest health coverage program in the U.S. Medicaid and CHIP provide robust benefits with little to no out-of-pocket costs for over 92 million people. Many of those enrolled in Medicaid or CHIP come from underserved communities whose populations have disproportionately higher uninsured rates, and who often experience chronic health issues. Over 70 percent of people with Medicaid or CHIP coverage are enrolled in managed care plans. Ensuring families and individuals can find an in-network provider and access health care coverage in a timely way is a foundational principle of health equity, and a critical priority for the Biden-Harris Administration.

Together, the Access NPRM and Managed Care NPRM include new and updated proposed requirements for states and managed care plans that would establish tangible, consistent access standards, and a consistent way to transparently review and assess Medicaid payment rates across states. The rule also proposes standards to allow enrollees to easily compare plans based on quality and access to providers through the state’s website. Other highlights from the proposed rules include:

• Establishing national maximum standards for certain appointment wait times for Medicaid or CHIP managed care enrollees, and stronger state monitoring and reporting requirements related to access and network adequacy for Medicaid or CHIP managed care plans, which now cover the majority of Medicaid or CHIP beneficiaries.
• Requiring states to conduct independent secret shopper surveys of Medicaid or CHIP managed care plans to verify compliance with appointment wait time standards and to identify where provider directories are inaccurate.
• Creating new payment transparency requirements for states by requiring disclosure of provider payment rates in both fee-for-service and managed care, with the goal of greater insight into how Medicaid payment levels affect access to care.
• Establishing additional transparency and interested party engagement requirements for setting Medicaid payment rates for home and community-based services (HCBS), as well as a requirement that at least 80 percent of Medicaid payments for personal care, homemaker, and home health aide services be spent on compensation for direct care workers (as opposed to administrative overhead or profit).
• Creating timeliness-of-access measures for HCBS and strengthening necessary safeguards to ensure beneficiary health and welfare as well as promote health equity.
• Strengthening how states use state Medical Care Advisory Committees, through which stakeholders provide guidance to state Medicaid agencies about health and medical care services, to ensure all states are using these committees optimally to realize a more effective and efficient Medicaid program that is informed by the experiences of Medicaid beneficiaries, their caretakers, and other interested parties.
• Requiring states to conduct enrollee experience surveys in Medicaid managed care annually for each managed care plan to gather input directly from enrollees.
• Establishing a framework for states to implement a Medicaid or CHIP quality rating system, a “one-stop-shop” for enrollees to compare Medicaid or CHIP managed care plans based on quality of care, access to providers, covered benefits and drugs, cost, and other plan performance indicators.

For fact sheets about the Ensuring Access to Medicaid Services NPRM, please see:

Summary of CMS’s Access-Related Notices of Proposed Rulemaking: https://www.cms.gov/newsroom/fact-sheets/summary-cmss-access-related-notices-proposed-rulemaking-ensuring-access-medicaid-services-cms-2442-p

Summary of Medicaid and CHIP Payment-Related Provisions: https://www.cms.gov/newsroom/fact-sheets/summary-medicaid-and-chip-payment-related-provisions-ensuring-access-medicaid-services-cms-2442-p

Summary of Key Home and Community-Based Services (HCBS) Provisions: https://www.cms.gov/newsroom/fact-sheets/ensuring-access-medicaid-services-cms-2442-p-notice-proposed-rulemaking

Summary of the Medical Care Advisory Committee and Beneficiary Advisory Group Provisions: https://www.cms.gov/newsroom/fact-sheets/ensuring-access-medicaid-services-cms-2442-p-notice-proposed-rulemaking

For a fact sheet about the Medicaid or Children’s Health Insurance Program (CHIP) Managed Care Access, Finance, and Quality NPRM, please see: https://www.cms.gov/newsroom/fact-sheets/notice-proposed-rulemaking-medicaid-and-childrens-health-insurance-program-chip-managed-care-access

Both NPRMs can be downloaded from the Federal Register at https://www.federalregister.gov/public-inspection. CMS looks forward to receiving feedback on both during the public comment period, which ends July 3, 2023.

Self-Diagnosis Is Controversial

In The Politics of Autism, I discuss evaluation and diagnosis.  Prominent people sometimes publicly engage in casual self-diagnosis.  Jerry Seinfeld did so years ago, and got a great deal of negative reaction, causing him to walk back his remarks.  

Laura Newberry at LAT:

As autistic social psychologist Devon Price points out, the diagnostic tools weren’t designed with a diverse patient population in mind. “The procedure for diagnosing autism was designed with young, white, cisgender male patients with visibly obvious symptoms in mind,” Price wrote on his blog. “To this day, it remains very common to be turned away from even being assessed for autism for being too old, too feminine (or effeminate), too socially appropriate, too good at eye contact, too Black, too brown, or too trans.”

In response to these barriers, a growing number of people are using social media and knowledge from those with lived experience in online communities to diagnose themselves with autism and ADHD without a psychologist’s rubber stamp, either out of necessity, principle, or both..

 ...

Critics inside and outside of neurodivergent spaces are debating the validity of self-diagnosis.

Some autistic people with a formal diagnosis argue that self-diagnosed people are silencing and diluting the power of “real” autistic people, and taking away resources from those who need them the most.

But [Jane] Wise notes that self-diagnosed people are unlikely to receive accommodations or funding — like disability benefits — from institutions that usually requires “proof” of these conditions.

Meanwhile, medical professionals and academics have warned against the dangers of people misdiagnosing themselves.

“The widespread popularization of disorders has made them virtual ‘floating signifiers’ for all manner of troublesome, frustrating, and disappointing experiences, from poor performance at work or school to feelings of being beleaguered and overwhelmed by all one has to do,” wrote sociologist Joseph E. Davis for Psychology Today. “Often enough, it is fair to say, the everyday distress, role conflicts, and lifestyle issues that motivate the personal appropriation of these categories have little to do with a mental disorder.”

RFK Jr is Still Pushing the Autism Myth

 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.

Isabelle Han at The Dartmouth:

On April 26, the Concerned Alumni of Dartmouth College hosted a sold-out roundtable discussion titled “Important Conversations Never Had — College COVID-19 Vaccine Mandates: Scientific, Legal and Ethical Considerations” at the Hanover Inn, followed by a speech from lawyer and presidential candidate Robert F. Kennedy Jr. A Q&A session had originally been scheduled to take place after the panel, but the segment was canceled after Kennedy announced his last-minute appearance at the event, according to Michael Koss, a member of Concerned Alumni of Dartmouth College.

...

Kennedy’s speech, which replaced the advertised Q&A, lasted for approximately 30 minutes and focused on the claim that vaccines cause autism in children.

“We have solid proof that they are causing more harm than [good]… that they are killing our children,” Kennedy said. “And yet a thousand colleges in this country still have these [COVID-19 vaccine] mandates.”

Kennedy added that he has met multiple women with children who have intellectual disabilities, which they believe “were caused by vaccines.” He pointed to the statistic that the rate of autism in children has increased as vaccination numbers have also increased.

“In my generation, [the rate of autism] is still one in 10,000,” Kennedy said. “In my kids’ generation, one in 34 kids have the diagnosis.”

According to the National Institutes of Health, while the rate of autism among children has risen since initial estimates in the 1960s, the diagnostic criteria used to classify the disorder has also expanded. The claim that vaccines cause autism has also been disproven, according to the CDC.

Kennedy added that he is not “anti-vaccine” but skeptical because there is no “placebo-controlled” study that proves that vaccines are safe. However, all vaccines approved for use in the United States are subject to placebo testing, according to the Food and Drug Administration.

Adding ADDM Sites

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

 An April 25 release from Autism Speaks:

This week, we proudly celebrate a historic expansion of the Autism and Developmental Disabilities Monitoring (ADDM) Network, from 11 to 16 sites across the country. The ADDM Network is the only collaborative network to track the number and characteristics of children with autism spectrum disorder (ASD) and other developmental disabilities in multiple communities throughout the United States. This is the first time since 2010 that the ADDM Network has added sites to its prevalence and surveillance work. The data and knowledge provided by the ADDM Network continues to inform and drive us forward in identifying gaps in diagnosis, improving screening tools and developing programs to reach underserved communities.

Autism Speaks has advocated in support of the CDC's autism activities for decades, through our advocacy for the Autism CARES Act, as well as supporting annual appropriations requests that have sustained and grown the level of funding for federal autism programs. It is thanks to our champions in Congress, the advocacy of Autism Speaks, partner organizations and countless advocates that spent years fighting for additional funding and successfully saw that the Consolidated Appropriations Act of 2023, enacted earlier this year, provided the Centers for Disease Control and Prevention (CDC) with support for the expansion of their work. As a result, the ADDM Network is now in its sixth phase of funding and includes fifteen funded sites and one CDC-managed site in Georgia (MADDSP).

The newly awarded sites include locations in Indiana, Pennsylvania, Texas (Austin) and Texas (Laredo) as well as Puerto Rico, marking the first time a US territory will be included in this research. Each ADDM site’s surveillance activities are different so that they collectively contribute to a fuller picture of what we know about autism. While every ADDM Network location will track ASD among 4- and 8-year-old children, nine sites will now also track transition planning and co-occurring conditions among 16-year-old children with ASD. This is almost a two-fold increase from five sites in previous years.

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."