Administration Actions to Help People with Disabilities During COVID Recovery

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

FACT SHEET: Administration Announces New Actions to Address the Needs of People with Disabilities and Older Adults in Response to and Recovery from COVID-⁠19

The Administration recognizes that the COVID-19 pandemic has had tremendous impacts on disabled individuals and has resulted in new members of the disability community.

Over the past year, the Administration has collaborated and consulted with the disability community andtaken several key actions to address the unique needs of individuals with disabilities. Among other actions, the U.S. government released key civil rights guidance to protect disabled individuals during the COVID-19 pandemic or any public health emergency; prioritized Long COVID services, supports, and research in the context of disability; established a call line dedicated to ensuring individuals with disabilities can equitably utilize the Administration’s at-home test distribution program; ensured disabled individuals and other high-risk individuals have access to at-home testing; and invested American Rescue Plan (ARP) resources to build COVID-19 vaccine confidence and access among people with disabilities.

Moving forward, the Administration will take several key steps to further our work to ensure that disabled individuals, regardless of where they live or the level of community transmission of the virus, have equitable access to COVID-19 testing, masks, and other critical mitigation strategies. The Administration remains committed to implementing these policies and developing additional policies in close collaboration with the disability community – keeping equity and accessibility at the center of our COVID-19 response and beyond. The Administration will:

• Equip schools with guidance and support to keep vulnerable students safe and learning in-person. The Department of Education (ED) will work with school administrators and educators on strategies they can use to continue providing safe, in-person instruction for all students in their classes. ED will engage the Centers for Disease Control and Prevention (CDC) to ensure that its guidance is fully aligned with the latest public health guidance and that schools have clear recommendations and strategies to help protect the safety of and access to rigorous learning that all children deserve. ED will also provide resources for parents who would like additional support in understanding how to navigate their child’s in-person learning experience through local regional parent training and information centers. Parents may find their local center here and reach out for direct assistance and referrals to other organizations, as well as to gain skills to effectively participate in the education and development of their children. States and school districts should use the unprecedented resources provided through the ARP to implement these recommendations and ensure access to a high-quality education for all students, including students with disabilities. Children learn best in-person, and are better able to engage with rigorous instruction and access services and supports tailored to their needs when they are learning alongside their peers. The President has been clear since Day One that we need students back to school for full-time, in-person learning, and thanks to the unprecedented resources provided through the ARP, schools have what they need to safely remain open, keep students and staff safe, and address the impact of the pandemic on student learning and mental health. Some students may need additional protections to ensure they can remain safe in the classroom – including students who are immunocompromised, with complex medical conditions, or with other disabilities that may put them at higher risk of severe outcomes from COVID-19. For nearly two years, educators across the country have provided services and supports to children with disabilities in ways never anticipated prior to the COVID-19 pandemic, and the Administration is committed to ensuring that children with disabilities continue to receive the services and supports they need so they can reach their highest potential.
• Expand the Department of Health and Human Services (HHS) Administration for Community Living’s Disability Information and Access Line to support people with disabilities who face difficulty using or cannot use a self-test. The Disability Information and Access Line (DIAL), available at 1-888-677-1199, is launching a new initiative to support disabled individuals who need assistance using at-home tests distributed by the Administration or support in finding alternatives to at-home testing. For individuals who can use an at-home test, DIAL operators are available to assist with ordering free tests; understanding instructions for test administration and test results; or providing alternative instructions for those unable to access, read, or understand the manufacturer’s version. For those who cannot use an at-home test, DIAL operators can assist individuals with ordering tests to collect a specimen that can be mailed back for results. For individuals who cannot use either an at-home test or an alternative “swab and send” test, DIAL operators can assist callers with locating their state or local health department and/or aging and disability resources for additional assistance with other testing options that may be available in their community, including identifying potential in-home testing options or assistance with transportation or companion support to visit a community-based testing site.
• Launch new COVID-19 testing guidance in American Sign Language and review all existing COVID-19 guidance to confirm accessibility for all disabled individuals. CDC recently released “How to Interpret Positive Self-Test Results” guidance in American Sign Language (ASL), a first step towards ensuring that deaf or hard of hearing individuals can access key information about how to protect themselves and their communities. CDC is also collaborating with the CDC Foundation, Georgia Tech’s Center for Inclusive Design and Innovation, and their partners across HHS to pursue key improvements for all COVID-19 guidance available on CDC’s website that cannot be accessed elsewhere: information in Braille, ASL translation, simplified text, and other alternative formats.
• Execute a new effort to develop at-home COVID-19 tests that are accessible to all. The National Institutes of Health (NIH)’s RADx program has launched a new effort to seek both short- and long-term solutions to improve at-home test accessibility. RADx will consult and work with national organizations who represent communities in need of accessible tests, and test manufacturers to inform the modification or development of more accessible at-home tests, including device design, packaging, and modes of instruction, and challenges. Though at-home COVID-19 tests were only invented last year, the Administration’s investment in this technology has rapidly scaled up manufacturing to the millions per day. This effort strives to ensure that all individuals have an option for at-home testing that can be used and interpreted without assistance, and will set the course towards accessible testing in the weeks and months to come.
• Incentivize all at-home test manufacturers to prioritize accessibility of at-home tests. The Administration has published a formal Request for Information (RFI) to ensure the preservation and expansion of current domestic manufacturing capacities for at-home rapid tests and point-of-care tests. The RFI specifically asks manufacturers to prioritize the accessibility of at-home tests for people who are blind or visually-impaired; individuals with physical, cognitive, or other disabilities; and individuals who need non-English language or literacy support. The Administration will use the information gathered in March 2022 to inform near-term investments – towards ensuring that accessible at-home tests are available for federal purchase.
• Request accessible instructions from manufacturers who have received a Food and Drug Administration (FDA) Emergency Use Authorization (EUA). The FDA has reached out to all test developers that have received an EUA to request that they provide instructions that are accessible and compliant with the Americans with Disabilities Act, including alternative text for all images as well as html versions. FDA will use all authority available to receive these accessible instructions as quickly as possible, while working with RADx to identify other wraparound services that can be provided immediately to make existing at-home tests more accessible.
• Distribute masks to disabled individuals through community-based organizations and jurisdictions. HHS will support health centers and aging and disability networks as they collaborate on efforts to distribute N95 masks to individuals with disabilities who cannot leave their homes. As the President announced in January 2022, the Administration is making 400 million N95 masks from the Strategic National Stockpile available to all individuals in the United States for free. HHS is sending tens of millions of free, high-quality masks to community health centers and rural health clinics – organizations that play a critical role in serving communities across the country, including individuals with disabilities.
• Call on states to directly distribute high-quality masks through community-based organizations serving individuals with disabilities. Over the past year, the Administration has also sent millions of high-quality masks to states and territories across the country. We encourage all jurisdictions to work in partnership with community-based organizations to expand access for the hardest-hit and highest-risk individuals – including people with disabilities who may be unable to leave their homes.

Patterns of Identification

In The Politics of Autism, I discuss evaluation and diagnosis.

Amy N. Esler and colleagues have an article at The Journal of Autism and Developmental Disorders titled "Patterns of Special Education Eligibility and Age of First Autism Spectrum Disorder (ASD) Identification Among US Children with ASD."

This study focused on timing of ASD identification in education versus health settings, including variation by key demographic factors, and the extent to which ASD characteristics are documented in educational evaluations for DD versus ASD eligibility. Educational settings are an important source of ASD identifcation, as they are by law accessible to all children and not just those with access to healthcare insurance coverage. Further, all states offer Part C services that provide evaluation and early intervention services to children from birth to age 3 years. Despite this access, our study found that children with records from education-only sources received their first comprehensive developmental evaluation and were identified with ASD over a year later than children with records from health sources. The median age of first evaluation for children from education-only sources was over 4 years, compared to under 3 years for children seen in health or health and education sources. This late age of evaluation is inconsistent with evidenced-based practices in early intervention for ASD as well as any DDs, which indicate that interventions provided in sensitive periods of brain development in early childhood can lead to positive outcomes (e.g., Campbell & Ramey, 1994; Dawson et al., 2012). The finding of later age of evaluation also implies that it is not educational eligibility practices and the use of the DD category instead of the ASD category that are delaying ASD identification; children were seen for any kind of evaluation in educational settings later than those seen in health setting.

Later evaluation and later identification in education-only sources was a consistent finding across sex, race/ethnicity, and presence of ID. Children with ID were identified earlier than children without ID across all record sources, but education-only sources were significantly later than health and health and education sources. In addition, Black, non-Hispanic, Asian, and Hispanic children were more likely to have education-only records compared to White, non-Hispanic children, which may suggest disparities in access to evaluations in health settings that might have resulted in earlier identification and intervention. Our findings are consistent with past research that both identified relatively later age ofidentification in education settings (Pettygrove et al., 2013) as well as lower utilization of health source evaluations for Black children (Yeargin-Allsopp et al., 2003) and Hispanic children (Pettygrove et al., 2013). In our analyses, age of identification and age of frst evaluation did not differ for health-only compared to health and education evaluations for most groups, with the exception that Black, non-Hispanic children with health-only records were evaluated later than Black, non-Hispanic children with health and education records. Black children with health-only and educational-only records had similar median age of first evaluation. This finding may suggest that, for Black children in our sample, access to services in both the educational and health systems facilitated earlier evaluation

Russian Disinformation Targets Antivaxxers

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Russian trolls have spread the myth via social media.  They are also spreading other vaccine disinformation.  Antivaxxers are doing Putin's work for him.

Brian Contreras and Wendy Lee at LAT:

Over the last few days, researchers have warned that President Vladimir Putin’s regime is pushing, and will continue to push, false narratives aimed at justifying its aggression.

At least some of those narratives are finding purchase among an American public divided by previous waves of disinformation, said Graham Brookie, senior director of the Atlantic Council’s Digital Forensic Research Lab. “What we see … is not an insignificant amount of organic audience engagement from U.S. citizens that are predisposed to have their previously held beliefs reinforced by Russian disinformation.”

For instance, he said, anti-vaccine groups that are already skeptical of the U.S. government are now primed to disbelieve the official U.S. government narrative around Ukraine.

Russian “influence operations” relying on disinformation “exist at a steady state,” and have for years, added Brookie, but the ramp-up to war in Ukraine has brought “a massive surge.”

Jennifer Granston, head of insights at the social media analytics firm Zignal Labs, said the conspiracy theory that the Ukraine conflict is a government-manufactured distraction from supposed harms of COVID-19 vaccines is one of the disinformation narratives her company has monitored in recent days, along with the claim, embraced by a Russian state media outlet, that the invasion is a mere “peacekeeping mission.”

St. Joseph's University to Open ASD Residence Hall

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

I also discuss the growing number of college students on the spectrum. 

Susan Snyder at The Philadelphia Inquirer:

St. Joseph’s, home to the Kinney Center for Autism Education and Support, plans to open its first residence hall specifically for students on the spectrum. With a capacity of up to 17 student residents and one student adviser, Saint Albert’s Hall off Lapsley Lane on the Lower Merion side of campus will undergo up to $250,000 in renovations this summer. A large three-story house, it used to be a women’s residence but most recently was used for COVID-19 housing.

“We came to the realization that the residence hall was a spot where a lot of our folks were struggling,” said Angus Murray, Kinney’s executive director. “Academically, they’re usually able to make the cut and succeed, but because of their social skills, they struggle in the residence halls. So we thought it might be helpful to have what we’re referring to as a longer runway as they transition from high school to college.”

St. Joseph’s will be among the first traditional college campuses in the country to offer such an option solely for its students. Landmark College in Vermont, for instance, is for students with learning disabilities and autism, and another group of residence halls in Vermont, Oregon, and Wisconsin, operated by Mansfield Hall, offer housing and services to students with autism from multiple college campuses.

Mercyhurst University in Erie offers apartment housing on campus with most of its students in the autism program living together there. Some colleges have specific floors with resident assistants trained in autism, said Jane Thierfeld-Brown, director of the College Autism Spectrum.

More than 70 colleges nationwide have autism programs, including Drexel, Eastern, Rutgers, West Chester, and several other Pennsylvania state universities in addition to St. Joe’s and Mercyhurst, according to the College Autism Spectrum.

Russia Pushes Antivax Messages

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Russian trolls have spread the myth via social media.  They are also spreading other vaccine disinformation.  Antivaxxers are doing Putin's work for him.

The Virality Project (2022). Memes, Magnets and Microchips: Narrative dynamics around COVID-19 vaccines. Stanford Digital Repository. Available at https://purl.stanford.edu/mx395xj8490

 The first operation linked to Russian actors involved a small network of fake personas that targeted right-leaning audiences on alternative social media platforms Gab and Parler, as well as the far-right discussion forum patriots[.]win, as early as November 2020. The accounts in the network posted a series of memes, articles, and messages that appeared aimed to exacerbate existing social and political tensions in the United States, including around the Biden administration’s response to COVID-19 and the vaccine rollout. Many of these posts featured highly inflammatory political cartoons, which may have been created by the actors themselves, and leveraged a variety of divisive partisan themes, such as suggestions that Biden was benefiting from Trump’s hard work to combat the pandemic while ignoring other issues such as rising US inflation. The accounts also attempted to amplify anti-vaccine conspiracy theories, spread doubts about vaccine efficacy, and depict the vaccine rollout as state-imposed oppression designed to enrich pharmaceutical companies and erode American freedoms.146 The actors behind this operation have been linked to the same group responsible for the “Newsroom for American and European Based Citizens” (NAEBC), a fake right-wing news outlet that targeted US audiences ahead of the 2020 election and was connected to Russia’s Internet Research Agency.147 

A second operation was attributed to a marketing firm operating from Russia called Fazze.148 While it is not clear who Fazze was working for, the company appears to have engaged in a concerted effort to covertly disseminate narratives online denigrating Western-made COVID-19 vaccines, including by attempting to hire YouTube influencers to deliver unattributed messages. In late 2020, for example, the group spread memes on Facebook and Instagram suggesting the AstraZeneca vaccine was dangerous because it was developed from a chimpanzee adenovirus—claims echoed by some Russian state media outlets that have attacked AstraZeneca for producing a “monkey vaccine.”149 Months later, the same actors were caught attempting to seed misleading information online about the safety of the Pfizer vaccine, this time by disseminating an alleged internal AstraZeneca report on vaccine mortality rates.150 Fake personas posted copies of the report online alongside a propaganda article, which claimed that the report was hacked orleaked. Fake social media accounts then posted these articles to groups concerned with COVID-19 information and vaccine safety. Fazze also contacted prominent social media influencers, offering to pay them to post videos amplifying the claims to YouTube, Instagram, and TikTok.151 The effort was quickly exposed, in part because the targeted influencers posted instead about the manipulative outreach, but some reports have noted that at least two influencers posted videos that appear to match the instructions that Fazze distributed.152

The narrative themes present in the efforts undertaken by the covert actors, particularly attempts to exacerbate existing social and political cleavages, were mirrored by Russian state media and representatives. For example, RT amplified claims suggesting vaccine passports are akin to government overreach and population segregation, proclaimed the emergence of a global “#Covid apartheid,” and suggested that harms associated with mRNA vaccines were downplayed by the media in collusion with US business elites.154 Russian state media also amplified research of questionable veracity that suggested Western vaccines are ineffective or harmful. However, in contrast to the covert campaigns , which were not intended to be obviously pro-Russian, the overt state media approach additionally contrasted the supposed failures of Western vaccines with the success of the Sputnik V vaccine. When the rollout of the Johnson & Johnson vaccine was paused to review a possible risk of blood clots, Russian state media paired neutral coverage of the specific story with articles highlighting the lack of blood clots associated with the Sputnik V vaccine.155 Russianstate media additionally featured interviews with anti-vaccine influencers who had been deplatformed by mainstream social media platforms—implying or suggesting that the US was censoring those critical of potentially dangerous vaccines.156

Broader Antivax Attitudes

 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.  

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.  Trump bears much of the blame. There is a great deal of overlap between MAGA World and the antivax movement.

Chloe Taylor at CNBC:

Gretchen LaSalle, a physician and clinical assistant professor at Washington State University’s Elson S. Floyd College of Medicine, told CNBC that the politicization of Covid and its vaccines, as well as a lack of understanding of vaccine ingredients and public health, had had “devastating” effects.

In 2020, LaSalle completed the American Academy of Family Physicians Vaccine Science Fellowship. As part of the program, she helped carry out a survey of more than 2,200 people, tracking their attitudes toward immunizations.

Covid vaccines were first administered in December 2020 in the United States.

“In living through the Covid-19 pandemic and seeing the devastating effects on lives and livelihoods with their own eyes, our theory was that people would be reminded of the vital importance of vaccination and that their confidence would increase,” LaSalle told CNBC in an email.

But 20% of respondents told LaSalle’s team they had become less confident in vaccines during the pandemic.

“This decrease is worrisome,” LaSalle said. “For illnesses like measles that require a very high percentage of the population (typically around 95%) to be immune in order to limit the spread, a decrease in vaccination percentages by even 5 to 10% could be devastating.”

Aaron Blake at WP:

For months, we’ve written in this space about how the Republicans’ pushback against coronavirus vaccine mandates could foment — and apparently has been fomenting — opposition to mandates of other vaccines, including for schoolchildren. It’s inherent in their talking points: If vaccines should be a matter of “choice,” why not those more long-standing vaccines, too? High-profile Republicans haven’t generally addressed where they draw the line and why.

Early efforts to wade into allowing more choice on other vaccines had been quickly pulled back. In Tennessee, the state momentarily prevented its health department from communicating with children about any vaccines. In Florida, a prominent state senator suggested that his state might “review” those other vaccine requirements, before walking it back.

But GOP lawmakers in other states are increasingly moving in this direction.

 

FAPE During COVID

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

 From the US Department of Education:

The U.S. Department of Education’s (Department) Office for Civil Rights (OCR) issues this fact sheet to remind elementary and secondary public schools of their obligations under Section 504 of the Rehabilitation Act of 1973 to provide appropriate evaluations and services to students with disabilities during the COVID-19 pandemic, including schools’ responsibility to provide compensatory services.

Background: Section 504 of the Rehabilitation Act

Section 504 is a Federal law that prohibits disability discrimination and guarantees that students with disabilities have equal access to educational opportunities, including a free appropriate public education (FAPE) in public elementary and secondary schools.1 FAPE under Section 504 is the provision of regular or special education and related aids and services that are designed to meet the individual educational needs of students with disabilities as adequately as the needs of non-disabled students are met.2

Students with Disabilities Retain Their Right to FAPE During the COVID-19 Pandemic

Although the COVID-19 pandemic has created unique challenges for schools, students, and parents, the responsibility for schools to comply with Section 504 continues regardless of how schools provide education: virtually, in-person, or with a hybrid learning model. In ensuring eligible students with disabilities receive FAPE under Section 504, schools must make decisions that consider students' health, safety, and well-being.3

When needed to ensure students with disabilities are receiving FAPE, schools must convene a group of persons knowledgeable about the student to make an individualized determination of whether a student’s current services should be changed due to the effects of the COVID-19 pandemic, such as the impact of loss of services on skills, mental health and trauma concerns, or the physical health effects of long COVID (post-COVID conditions).4 Regardless of the challenges schools face during the pandemic, students with disabilities retain their right to FAPE under Section 504.

Students with Disabilities May Be Entitled to Compensatory Services if They Did Not Receive Appropriate Evaluations or Services During the COVID-19 Pandemic

If a student with a disability did not receive appropriate evaluations or services, including the services that the school had previously determined they were entitled to, then the school must convene a group of persons knowledgeable about the student to make an individualized determination whether, and to what extent, compensatory services are required.5 Unlike the FAPE inquiry, which requires the group to determine appropriate services going forward, the compensatory services inquiry requires looking backwards to determine the educational and other benefits that likely would have accrued from services the student should have received in the first place.6

Compensatory services are required to remedy any educational or other deficits that result from the student with a disability not receiving the evaluations or services to which they were entitled.7 For example, a school may need to provide compensatory services for a student who did not receive physical therapy during school closures or for a student who did not receive a timely evaluation. Providing compensatory services to a student does not draw into question a school’s good faith efforts during these difficult circumstances. It is a remedy that recognizes the reality that students experience injury when they do not receive appropriate and timely initial evaluations, re-evaluations, or services, including the services that the school had previously determined they were entitled to, regardless of the reason.

In general, the individualized determinations of whether, and to what extent, compensatory services are required must be made by a group of persons knowledgeable about the student, including for example, school nurses, teachers, counselors, psychologists, school administrators, social workers, doctors and/or family members.8 The following factors may be relevant for the group of knowledgeable persons to consider in determining the appropriate type and amount of compensatory services:
the frequency and duration of missed instruction and related services;
whether special education and/or related services that were provided during the pandemic were appropriate based on the student’s individual needs;
a student’s present level of performance;
previous rates of progress;
the results of updated evaluations;
whether evaluations were delayed; and
any other relevant information.9

Ideally, the team of knowledgeable persons will come to a mutually acceptable decision regarding compensatory services to mitigate the impact of the COVID‑19 pandemic on the child’s receipt of services.

Under Section 504, if a parent or guardian believes that their child has not received or is not receiving FAPE, does not have equal access to other services provided by the school, or did not receive or is not receiving appropriate compensatory services, they may seek a hearing under the school’s Section 504 due process procedures10 or file a complaint with OCR. A school’s agreement to provide compensatory services is one way OCR remedies disability compliance issues when appropriate.

For information on how to file a complaint with OCR, please see https://www2.ed.gov/about/offices/list/ocr/docs/howto.html.

Antivax Owens

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

A typical antivax trick is to use innocuous-sounding terms such as "informed consent." 

I’m sure measles, mumps and rubella will be better this time around. pic.twitter.com/OFqRrhdtkL

— Molly Jong-Fast (@MollyJongFast) February 21, 2022

Antivax Influencers Focus on Mothers

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

At Information, Communication, and Society,  Stephanie Alice Baker and Michael James Walsh have an article titled: "`A mother’s intuition: it’s real and we have to believe in it’: how the maternal is used to promote vaccine refusal on Instagram."

From the article:

Reports suggest that mothers bear the primary responsibility for decisions regarding their children’s health (Kaiser Family Foundation, 2005), including the decision on whether to vaccinate their children (Petts & Niemeyer, 2004). There is a common assumption that suburban mums represent a significant proportion of anti-vaccine advocates. Beliefs of this kind are perpetuated by the media. For example, during the pandemic a series of headlines explicitly identified mothers as responsible for spreading medical misinformation: what was referred to as ‘Pinterest moms’ (Winter, 2020), ‘Whole Foods moms’ (Lubrano, 2019) and ‘QAmom’ (Dickson, 2020). While there is a rich body of literature on the social determinants of parental decision-making on childhood vaccination, less attention has been paid to the ways in which mothers are strategically targeted by anti-vaccine advocates. In this article we compensate for this neglect by examining how the maternal is appealed to, and represented, by anti-vaccine advocates online during the pandemic. This is achieved by analysing the communicative techniques used by a series of high-profile anti-vaccine influencers, referred to as the ‘Disinformation Dozen’, on Instagram for 19 months from 1 January 2020 to 31 July 2021. Our findings reveal the ways these influencers strategically attempt to appeal to mothers as the subject and object of anti-vaccine content online, questioning the common assumption that suburban mums are solely responsible for the decision not to vaccinate their children.

...

In a retracted paper in The Lancet, Andrew Wakefield and his colleagues falsely claimed that there was a connection between the MMR vaccine, autism and bowel disease. The paper propelled Wakefield to notoriety and reignited the anti-vaccine movement (The College of Physicians of Philadelphia, 2018). Wakefield’s paper was one of many contributors to the anti-vaccine movement; the key difference is that his study received widespread media attention (Berman, 2020), coinciding with the advent of the search engine, Google, and the rise of the global internet. Although Wakefield was struck off the medical register in Britain in 2010, he remains a prominent figure of the anti-vaccine movement today, directing films that question the safety of vaccines and the intentions of the government and pharmaceutical industry, harnessing social media to build and sustain a loyal online following.

...

Anti-vaccine advocates also appeal to public fears about vaccine ingredients as ‘artificial’ and ‘harmful’ (e.g., the mercury-based preservative, Thiomersal) by implying a causal link between vaccines and autism. Many of these online marketing campaigns deliberately target mothers as the primary caregivers of children. Anti-vaccine messaging is also amplified on social media by influencers, who pursue fame online as a vocation for profit (Baker, 2021).

...

In addition to his highly publicised MMR study, Wakefield has produced and directed a series of films, including Who Killed Alex Spourdalakis (2015), Vaxxed (2016) and 1986: The Act (2020), all of which purport a connection between vaccines and autism. Instagram was chosen as the site of data collection as this was – at the time of data collection – the main platform used by these influencers. The site’s algorithm also actively recommends COVID-19 vaccine misinformation (CCDH, 2021a). The images shared on Instagram serve as powerful modes of persuasion that are often difficult to regulate (Baker & Rojek, 2020).

...

In addition to these personal anecdotes, hashtags are commonly used to extend audience reach. This is achieved by associating anti-vaccine messages with popular protest movements, such as Black Lives Matter. For example, theories of medical racism, which draw attention to the racist policies and practices that historically informed the medical academy (e.g., unequal access to health care, the segregation of medical facilities and involuntary medical experimentation on racial minorities – see Nuriddin et al., 2020), began to circulate on Andrew Wakefield’s account on 2 June 2020, a week after George Floyd was killed. Several of Wakefield’s posts in the following week drew on this theme of medical racism to encourage vaccine hesitancy by claiming that the government is ‘endangering’ black children via vaccination despite knowing that ‘African American boys are 236% more likely to be diagnosed with autism when vaxxed with MMR’. The theme of medical racism, which is presented as ‘the new apartheid’, was also employed by Kevin Jenkins and Robert F. Kennedy Jr., before Kennedy’s Instagram account was suspended. While the issue of medical racism appeared to have limited impact, Wakefield’s association of anti-vaccine content with the Save the Children charity proved to be more effective in extending audience reach. From the 3 May 2021, Wakefield hijacked the #SavetheChildren, #SaveourChildren and #SavetheBabies hashtags to promote his new film, 1986 – The Act. This resulted in a significant increase in engagement with likes on subsequent posts using these hashtags more than doubling from 1171 to 2990. The #SavetheChildren hashtags not only made Wakefield’s posts more discoverable, they associated the anti-vaccine movement and the Save the Children movement as common efforts to protect innocent children from harm.

Nebraska Bill on Screening

In The Politics of Autism, I discuss the evaluation and diagnosis of young children.  Screening is an important part of the process.

 Sarah Sparks at Education Week writes about an autism screening bill in Nebraska:

If the bill is approved, Nebraska would become the first state to require autism assessment as part of pre-school health screening, though special education advocates have long fought for better and earlier screening. While federal law requires districts to identify and evaluate all children with disabilities, it does not specify `how early or often states must screen for disabilities.

That means Nebraska’s bill could become an experiment for states and districts facing an all-time high in autism.

“Autism used to be a low-incidence disability ... but it is no longer considered low incidence; schools are seeing it [regularly]. In any typical 3rd grade class, we can expect to see at least one kid with autism,” said Jennifer Hall-Lande, a psychologist and research associate at the Institute on Community Integration and Masonic Institute on the Developing Brain, both at the University of Minnesota.

...

If passed, Omaha Sen. Jen Day’s bill, known as LB997, would add autism screening to the standard physical and vision screenings required for all children before kindergarten or when transferring from another state. The proposal would require a trained screener—including a doctor, school nurse or psychiatrist, among others—to use an evidence-based and developmentally appropriate screener.

The screening proposal is based on a program developed in the 24,000-student Millard public schools in Omaha. Jean Ubbelohde, early education coordinator at Millard, said the district began autism screening before the start of school and at 18, 24, and 30 months, after surveys found a significant portion of pediatricians and family physicians in the area were not following guidelines from the American Academy of Pediatrics, which call for autism screening at 18 and 24 months.

“Even more disappointing was [doctors] who were using it and were getting a high score [indicating the potential for autism] on that screener didn’t know what to do with the information with families,” Ubbelohde said.

Red COVID

 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.  

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.  Trump bears much of the blame. There is a great deal of overlap between MAGA World and the antivax movement.

 

A brief history:
1. Covid arrives first in costal cities, which are heavily Democratic.
2. Then it spreads across the across the U.S. By early 2021, cumulative deaths are similar across red, purple and blue areas.
3. The vaccines arrive, and the situation changes sharply. pic.twitter.com/2YSpR5sttJ

— David Leonhardt (@DLeonhardt) February 18, 2022

Texas Voting Law v. People with Disabilities

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."

Sneha Dey at The Texas Tribune:

Republicans enacted restrictions last year on the state’s voting process, including rules on how Texans can assist voters when casting ballots. Texans assisting other voters must now fill out paperwork disclosing their relationship, indicate whether compensation was provided and recite an expanded oath, now under the penalty of perjury, stating that they did not “pressure or coerce” the voter into choosing them for assistance.

Texans who offer or accept compensation for providing voter assistance would be in violation of the new rules, creating anxiety among those who assist people with disabilities as part of their job.

“There are voters with disabilities who use their personal aides or personal attendants to assist them in completing daily tasks, and voting is a daily task,” said Molly Broadway, a voting rights training specialist at Disability Rights Texas, adding that she has already received calls from assistants afraid of incurring criminal charges for activities that are usually part of their duties. “It’s a very present, very real need that exists.”

Texans who drive at least seven voters to the polls are also considered assistants and must comply with new rules on compensation. Broadway said she has heard concerns from nursing home employees who provide transportation to polling places.

The new legislation also limits any kind of voter assistance to “reading the ballot to the voter, directing the voter to read the ballot, marking the voter’s ballot, or directing the voter to mark the ballot.” But voters with intellectual and developmental disabilities might need additional help, such as gestures or reminders about how they had intended to vote, to get through the process, Broadway said.

Mortality Rates

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

 Ferrán Catalá-López and colleagues have an article at JAMA Pediatrics titled "Mortality in Persons With Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder: A Systematic Review and Meta-analysis."  

Key Points

Question  Are persons with autism spectrum disorder (ASD) or attention-deficit/hyperactivity disorder (ADHD) at a higher risk of dying compared with the general population?

Findings  In this systematic review and meta-analysis of 27 studies, persons with ASD or ADHD had higher mortality rates than the general population. When causes of death were examined, ASD and ADHD were associated with higher mortality due to unnatural causes (eg, injury, poisoning, and other), and only persons with ASD had an increased risk of mortality from natural causes of death (eg, neurologic, respiratory system, and cancer).

Meaning  Having ASD or ADHD may be associated with higher mortality risks.

From the article:

This systematic review and meta-analysis comprehensively assess for the first time, to our knowledge, the available evidence regarding the risk of mortality in persons with ASD or ADHD. We included 27 epidemiologic studies in our quantitative evaluation, 16 of which were judged to be at low risk of bias. We found that ASD and ADHD are associated with a significantly increased risk of all-cause mortality. However, the results should be interpreted with caution because there was evidence of heterogeneity between study estimates of the mortality risks. When we examined causes of death, ASD and ADHD were associated with higher mortality risk due to unnatural (external) causes, and only persons with ASD had an increased risk of mortality from natural causes of death, but the evidence was judged as only low confidence. Fewer studies exist examining the risk of mortality among first-degree relatives of persons with ASD or ADHD, to our knowledge.

Several mechanisms, including health determinants and biological pathways, have been suggested as potential factors that might explain the excess premature mortality among children and young persons with ASD or ADHD. However, establishing a causal relationship is difficult because the associations between mortality and childhood-onset developmental disorders are complex. Severe mental and behavioral disorders appear to be associated with reduced life expectancy, both in terms of mortality from external causes and mortality from other medical conditions or diseases.10,11 Findings from previous studies and reviews have suggested that children and adults with ASD/ADHD are associated with coexisting mental and neurologic conditions (such as oppositional and conduct disorders, tic disorders, epilepsy, depression, anxiety, and substance use disorders).3-5,57 As children and young persons with ASD/ADHD age, they often experience emotional and social difficulties.3-5 Some people also exhibit impulsive forms of behavior with negative impacts on their quality of life. Behaviors such as impulsivity and/or inattention can be contributing factors for injuries and unintentional incidents in children with ASD/ADHD.58,59

Previous studies16,17,49 have tested potential modifying effects of comorbidity on mortality risk for persons with ASD/ADHD. For example, Dalsgaard et al,16 Sun et al,17 and Schendel et al49 suggested increased mortality RRs in persons with ADHD or ASD with comorbid neurologic or mental conditions (eg, oppositional defiant disorder, conduct disorder, or substance use disorder). However, it should be noted that presence of ASD and/or ADHD with any distinct additional medical condition (the so-called comorbidity or multimorbidity) may be confounded by previous exposures (such as socioeconomic factors, environmental factors, and childhood abuse).60 Prevention efforts to reduce mortality in persons with ASD or ADHD may need to address the conditions that appear to mediate causes of death. While potentially preventable, reducing excess premature mortality (eg, due to external causes) can be challenging. For example, systematic screening would be advisable in health services and social care, and preventive education can be feasible in almost all circumstances. However, some persons with ADHD/ASD are often from socioeconomically disadvantaged groups/areas and are more likely to be exposed to environmental risk factors (eg, substance misuse, violence) than other populations.61-63 Similarly, studies64,65 have shown that persons with ADHD or ASD may be less likely to receive timely diagnosis and prompt care. All these factors are possible complications of ASD/ADHD, so the implication for practice is that health care professionals should recognize their importance.