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Thursday, December 31, 2020

Kennedy Niece Speaks Out For Vaccines

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.


My hospital, along with hundreds of others across the country, recently began to administer the first Covid-19 vaccines. My social media feed is filled with pictures of friends and colleagues, sleeves rolled up, writing about how much this vaccination means to them. In an otherwise dark year, it’s a moment of hope.

And yet, not everyone is celebrating the historic vaccine rollout. I stopped following my uncle Robert F. Kennedy Jr. — a noted anti-vaccination activist — on social media in 2019, when he was posting misinformation about the dangers of the measles, mumps and rubella vaccine in the midst of an outbreak.

...

In May 2019, my sister Maeve Kennedy Townsend McKean; my mother, Kathleen Kennedy Townsend; and my uncle Joseph P. Kennedy II wrote in Politico about their concerns regarding my uncle Bobby’s spread of distrust in vaccines.
At that time, there was a resurgence of measles, a highly infectious disease which the United States had declared eliminated in 2000. According to the Centers for Disease Control and Prevention, the outbreak was largely “driven by misinformation about measles and the MMR vaccine, which has led to undervaccination in vulnerable communities.”

What’s more, a 2019 study found that the over half of Facebook advertisements spreading misinformation about vaccines were funded by two anti-vaccine groups, including the World Mercury Project, which was founded by my uncle Bobby. The organization has since changed its name to Children’s Health Defense, and Bobby is chairman. For its part, Facebook is no longer allowing anti-vaccination ads on its platform.

...

 We are now bracing ourselves as in New York our Covid-19 case numbers tick up once again. The pandemic is far from over. And yet, this vaccine is our best opportunity to save lives. There is no time to waste. Being a doctor does not make me a vaccine expert, but I know whom to trust: immunologists like Dr. Fauci and Dr. Kizzmekia Corbett, who have spent their whole lives studying vaccine development.

When the vaccine is offered to you, I urge you to take it. Do it for yourself, for your family and for your friends. Do it for your country.

Wednesday, December 30, 2020

The Mental Health of Autistic Children

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families

Connor M. Kerns, Jessica E. Rast, and Paul T. Shattuck have an article at The Journal of Clinical Psychiatry titled "Prevalence and Correlates of Caregiver-Reported Mental Health Conditions in Youth With Autism Spectrum Disorder in the United States."  The abstract:

Objective: Mental health conditions (MHCs) have substantial personal and economic costs for children with autism spectrum disorder (ASD); yet, a current population-based prevalence estimate is lacking.

Methods: This study included 42,283 caregivers of children (ages 3–17 years) from the 2016 population-based National Survey of Children’s Health. Prevalence and correlates of caregiver-reported MHCs were estimated in children with ASD and compared with those in children with intellectual disability (ID), children with special health care needs (SHCN), and “all others” (no ASD, SHCN, or ID).

Results: 77.7% of children with ASD had ≥ 1 MHC; 49.1% had ≥ 2. The most common MHCs were behavior/conduct problem (60.8%), anxiety problem (39.5%), attention deficit disorder (ADD)/attention-deficit/hyperactivity disorder (ADHD) (48.4%), and depression (15.7%). Substance abuse was the only MHC less common in ASD. MHCs were more common in youth with ASD versus SHCN, “all other” youth, and those with ID. MHCs were common in ASD by ages 3–5 years (44.8% ≥ 1 condition) and increased with age (85.9% ≥ 1 condition, ages 12–17 years). Among children with ASD, girls had twice the odds of an anxiety problem, those with ID had 4 times the odds of behavior/conduct problem, and those with childhood adversity had greater odds of an anxiety problem (odds ratio [OR] = 2.66) and ADD/ADHD (OR = 1.99).

Conclusions: Caregiver-reported MHCs are prevalent in children with ASD in the US from a young age and characterize > 85% by adolescence. There is an outsized need for effective MHC assessment and treatment of these youth that demands expedient innovation in both MHC and developmental disability policy and practice.

At Healio, Joe Grimigna reports on the study:

Evidence-based assessment and treatment of [mental health conditions] in ASD should be used to reduce this demand by clarifying which children are most in need of and likely to benefit from available treatments,” Kerns and colleagues wrote. “Nonetheless, there is an incongruence between the ubiquity of [mental health conditions] in ASD and the disconnected disciplines and support systems for developmental disability and mental health that exist. Advances in research are likely to be realized only if steps are also taken to implement health care policies and training initiatives that support integrated developmental and mental health care going forward.”

Indeed, the fragmentation of the service system is a pervative problem for people with developmental disorders.

 

Tuesday, December 29, 2020

Autistic People and the Justice System

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand

From Dogwood:
According to experts in the field, existing intervention programs across the country are already improve the results of interactions between police and people with autism.

Harvey Rosenthal, chief executive officer of the New York Association of Psychiatric and Rehabilitation Services, Inc. (NYAPRS), says Oregon’s crisis response program CAHOOTS is the example that should be followed in every state.

The program allows peers with behavioral health disorders to be part of the crisis response team in order to ensure people with these conditions receive appropriate treatment and support.

Rosenthal says there are three prongs that make up the CAHOOTS program. The first is diversion, or efforts to try to keep individuals with behavioral health disorders out of the prison system. If diversion isn’t possible, they offer rehabilitation and re-entry services.

Rosenthal said the key to re-entry is to ensure the individual has access to appropriate health care.

“It is crucial that each incarcerated individual who needs it has immediate access to Medicaid when they are released. This is to ensure they can continue their medications and care uninterrupted. This is not always the case. Very often they must wait for a month or more,” Rosenthal said.

Monday, December 28, 2020

A Song for Anti-Vaxxers

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.

The British sister act Flo and Joan have a song for anti-vaxxers:
Hush, little baby, don’t say a word 
Daddy’s going to cure you with good wishes and herbs 
And if those good wishes do you wrong 
You won’t have to worry 
‘Cause you won’t last long 

 I will not have my angel injected with autism 
From these cocktails you concoct 
From witches’ tits and horses’ jizzum 
The facts might say otherwise 
But doctors screw up all the time
 
I haven’t trusted science since I saw the film Flubber

 

Sunday, December 27, 2020

"Avoid Chelating Products"


Amy Sharpe at The Daily Mirror:
Parents are using a US-made “detox spray” with side effects of “sickness, sweats and rashes” to treat autistic children.

Advanced TRS - which stands for Toxic Removal System - can be bought online in the UK for £57.50 a bottle.

Its UK website claims it removes toxins and heavy metals that contribute to “health problems, such as asthma, stroke, heart disease and developmental deficiencies”. It does not mention autism.

But dozens of parents told how they use it as an autism treatment - and claimed alleged side-effects show the detox works.

The theory that chelation - removal of heavy metals - alleviates autism has been discredited. Chelation itself has been linked to increased risks of organ damage.
Prof Richard Mills, of non-profit At-Autism, warned: “Parents should avoid chelating products.”

TRS is not advertised to treat autism on its UK website, but a US-based social media group for the product claims it can help “neurological, speech, sensory, gut, immune and behavioural issues” – traits in autistic people.

Saturday, December 26, 2020

Entryism, Antivaxxers, and COVID

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread Trump has helped spread misinformation.

 Antivax groups engage in "entryism."  From The New Statesman: "The founding example of entryism was provided by Leon Trotsky and the “French turn”. In 1934, the Russian revolutionary persuaded his supporters to dissolve the Communist League into the Socialist Party in order to maximise their influence. The term has since been applied to any group that enters a larger organisation with the intention of subverting its policies and objectives."

Anita Chabria at LAT:

As California and the nation begin rolling out coronavirus vaccines, anti-vaccine campaigners are aligning with small-business owners and far-right groups, an effort that some experts fear could supercharge mistrust of government at a crucial moment for public health.

In California, the movement toward businesses is being led by a group calling itself Freedom Angels 2.0. Originally founded by three women in response to a 2019 state bill tightening vaccine requirements for attendance in schools, the organization was best known for its protests at the state Capitol against that measure and other vaccine legislation, often filling hallways and disrupting hearings with children in tow.

But as the coronavirus has spread, so has its message — encompassing a more mainstream, values-driven ideology that centers on government overreach. That broader approach has helped the organization interest a new audience in the business community, along with others worried about schools, the economy and the social toll of isolation for seniors.

“There is this strategic mission creep into other groups that might feel disaffected,” said Richard Carpiano, a professor of public policy and sociology at UC Riverside, who has followed the anti-vaccine movement.

...

Richard Pan (D-Sacramento), the only doctor in the state Senate who has also been targeted for harassment by the Freedom Angels and other anti-vaccine groups, said he believes the anti-vaccine contingent remains a “loud minority,” but concedes it could have an oversized effect.

http://www.autismpolicyblog.com/2020/06/anti-vaxxers-and-anit-maskers.html,” Pan said. “They are just large enough to ruin it for all of us, and that is the big problem.”




Friday, December 25, 2020

Change in Diagnosis Pattern

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

Alix S. Winter, Christine Fountain, Keely Cheslack-Postava, and Peter S. Bearman have an article at Proceedings of the National Academy of Sciences titled The Social Patterning of Autism Diagnoses Reversed in California between 1992 and 2018."

Significance

Rates of autism diagnosis in the United States have historically been higher among more advantaged social groups—Whites and those of higher socioeconomic status (SES). Using data from all births in the state of California in 1992 through 2016, we find that these trends reversed during our study period. By 2018, diagnosed autism incidence rates for 3- to 6-y-old children were higher for children of Black and Asian mothers than children of non-Hispanic White mothers and were higher for children of lower SES than of higher SES parents. These reversals point to the fundamental role that access to knowledge and resources plays in driving increased autism prevalence and shifting patterns of autism cases over the past quarter-century.

Abstract

As rates of autism diagnosis increased dramatically over the past number of decades, prevalence rates were generally highest among Whites and among those of higher socioeconomic status (SES). Using a unique, population-level dataset, we find that rates of autism diagnosis continued to be on the rise in recent years, but who is diagnosed changed during the study period. Our data consist of birth records of all 13,272,573 children born in the state of California in 1992 through 2016 linked to autism caseload records for January 1992 through November 2019 from California’s Department of Developmental Services. California’s diagnosed autism incidence rate rose from 0.49 per 1,000 3–6 y olds in 1998 to 3.49 per 1,000 3–6 y olds in 2018, a 612% increase. However, diagnosed incidence rates did not rise uniformly across sociodemographic groups. By 2018, children of Black and Asian mothers were diagnosed at higher rates than children of non-Hispanic White mothers. Furthermore, among children of non-Hispanic White and Asian mothers, children of lower SES were diagnosed at higher rates than children of higher SES. These changes align with sociological theories of health disparities and contain important clues for more fully understanding the autism epidemic.

From the article:

Multiple factors likely help account for the recent rise of autism diagnoses among children of lower SES parents and parents of color. In 2006, the American Academy of Pediatrics recommended universal screening for autism during well-child visits at 18 mo of age (40), a recommendation that, if implemented, decouples autism diagnosis from parents’ access to knowledge. Additionally, autism has strong advocacy in the United States (41) and in California specifically. As of 2009, California’s state Senate includes the Senate Select Committee on Autism and Related Disorders, which has spearheaded legislation to improve linguistic and cultural competency at the DDS’ regional centers and among DDS vendors. The Committee has also held hearings on “ensuring fair and equal access to regional center services for Autism Spectrum Disorders,” among other topics (42). Collectively, these and other advocacy efforts have likely contributed to the deconcentration of autism diagnoses from children of high SES, White parents, in turn, broadening access to the services that an autism diagnosis unlocks.

 


Thursday, December 24, 2020

The Anti-Vaxx Playbook

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread Trump has helped spread misinformation.

The Center for Countering Digital Hate has a report titled "The Anti-Vaxx Playbook."  The executive summary:

1. Drawing on access to a private conference attended by the world’s leading antivaxxers, CCDH has been able to reveal their plan to use social media to spread distrust about the Covid vaccine and recruit new supporters to their cause.

2. Leading anti-vaxxers view Covid as an historic opportunity for them to reach largernumbers of the public than ever before, and to create long-lasting distrust in theeffectiveness, safety and necessity for vaccination.

3. Online anti-vaxxers continue to grow, with 147 of the leading accounts gaining 10.1 million followers since 2019, an increase of 25%. The additional growth took place primarily on Instagram and YouTube, with anti-vaxxers adding an extra 4.3 million followers on each platform.

4. Anti-vaxxers have developed a sophisticated playbook for spreading uncertainty about a Covid vaccine, converting vaccine-hesitant people into committed antivaxxers, and resisting attempts to remove their misinformation.

5. Online anti-vaxxers have organised themselves around a “master narrative” comprised of three key messages: Covid is not dangerous, the vaccine is dangerous and vaccine advocates cannot be trusted.

6. Alternative health entrepreneurs, conspiracy theorists and accounts aimed at parents or ethnic communities vastly expand the reach of this master narrative and tailor it to cause uncertainty in their audiences.

7. Anti-vaxxers have created accessible online “answering spaces” such as Facebook Groups, Instagram accounts and purpose-built websites that are designed to answer legitimate questions about a Covid vaccine with anti-vaccine misinformation.

8. The most established anti-vaccine “answering spaces” identify vaccine hesitant individuals, convert them into committed anti-vaxxers and offer training to make them more effective activists.

9. Anti-vaxxers are attempting to mitigate the removal of their misinformation by adopting a “Lifeboat Strategy” of migrating their followers to “alt-tech” platforms such as Telegram and Parler, but with little success.

10. The public are urged not to engage with anti-vaxx misinformation online, even to rebut it or criticise it, because doing so only spreads the misinformation to new audiences. The example is given of anti-vaxxer narratives “trending” on social media on the first day of the vaccine rollout, primarily due to pro-vaccine accounts amplifying them. Instead, users are urged to share pro-vaccine messages.

11. Platforms are urged to remove the accounts of anti-vaxx “superspreaders”, those accounts with the largest followings and using the most cynical tactics. The report provides evidence that some are guilty of promoting false cures for Covid and training their social media followers to spread harmful misinformation.

12. Pro-vaccine practitioners are advised to focus on inoculating the public by ignoring individual memes and focusing on the master narrative, with a series of suggestions for how “inoculation” can make individuals more resilient to anti-vaxxer messaging.

From the report:

Our research discovered one document listed as a resource for activists on the now defunct “Stop Mandatory Vaccination” Facebook Group that contained a list of talking points aimed at persuading African Americans that health authorities such as the CDC had suppressed evidence that vaccine injuries were more common amongst African Americans. Another emerging version of this narrative suggests that vaccine advocates are planning to target ethnic minorities, using “economic coercion” to encourage them to use a Covid vaccine not for the benefit of those communities, but as a large-scale experimental sample. 

An Instagram post from Robert F. Kennedy Jr. with 22,000 likes advertises an event linking vaccines to the Tuskegee experiment, with a caption suggesting the MMR vaccine is linked to higher rates of autism in African-American children 


 

Wednesday, December 23, 2020

Autistic People Have Higher COVID Death Rates

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. 

Alistair MacDonald and  Caitlin Ostroff at WSJ:
A higher Covid-19 death rate among people with autism, Down syndrome and other intellectual development disorders has sparked a lobbying effort by family members and caregivers to persuade states to give priority to the group in vaccine rollouts.

People with such disorders, who account for one in 50 Americans, are on average more than twice as likely to die from Covid-19 as the wider U.S. population, according to a Wall Street Journal analysis of data from 12 states. The analysis mirrors similar, recent studies. One study, conducted by nonprofit organization FAIR Health, found the group’s death rate is higher than many others already widely recognized as particularly vulnerable to the disease.
...
Some congregate care facilities accommodate people with intellectual development disorders, but the large majority of people with such disorders live in more informal facilities or family homes, said Kristyn Roth, an executive at the Autism Society of America, a nonprofit that has been lobbying the Centers for Disease Control and Prevention and others for priority for vaccines.
...

Across states, people with such disabilities are likely dying at a greater rate than the wider population because they suffer higher incidences of obesity, immune disorders, respiratory illnesses and other conditions that have led to higher death rates during the pandemic, health experts say. Even without the virus, this community’s death rate is typically higher than the general population in any year, due to these and other health issues, as well as high suicide rates for people with autism.

But Covid-19 has added another layer of fatalities.

According to an analysis of claims data for privately insured patients conducted by FAIR Health, people with intellectual development disorders died at a higher rate than those with conditions well known to contribute to higher Covid-19 death rates, such as leukemia, Alzheimer’s disease and heart disease.

A separate October study of data from eight U.S. states by researchers at Syracuse University, Temple University and elsewhere found that 12.3% of adults with these disabilities died from Covid-19 infection, compared with 6.7% of the general public in these states.

Scott D. Landes, who has studied the effects of Covid-19 on people with disabilities at Syracuse, said he and other researchers want to determine how much the higher death rate is related to the difficulties some people with intellectual development disorders have communicating with medical professionals.

“Historically, this is a population that has not achieved as good a care and is not as well understood by the medical community,” he said.

One of the virus’s victims from the Medford [NY] home was Stuart Darch, a 72-year-old autistic man who suffered from anxiety and had difficulty communicating, Mr. Morgan said. He was taken to Long Island Community Hospital in late March. A nurse told his niece, Alexandra Noyes, that he was agitated and had shallow breathing.


Tuesday, December 22, 2020

Vaccine Misinformation and Conspiracy Theory

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread Trump has helped spread misinformation.

Alexandra Levine at Politico:
Anti-vaccination movements are not new to the online landscape, and tech platforms have long been grappling with how to handle them. But false claims and conspiracies about Covid vaccines are already looking more difficult to police than those social media companies have had to deal with in the past.

Part of the trouble is that there is limited data about the coronavirus vaccines, making some narratives harder to refute than claims about vaccines that have been around for years — such as that childhood shots cause autism, which repeated studies over years have proven to be untrue. Even debunking unfounded claims about the Covid vaccines involves explaining a vaccine that operates by a new mechanism.

Another is that the outbreak arrived at a time when enormous communities distrusting of government have been growing online.

Taken together, the scientific unknowns and political anxiety have mixed to produce a complex new breed of anti-vax.

Melanie Smith, head of analysis at Graphika, a social media analytics firm that tracks misinformation, said the fringe QAnon movement has gained influence with anti-vax communities online, boosting momentum and pushing unfounded claims about Covid vaccines into the mainstream.

QAnon at its core is an anti-government conspiracy — and we are existing in a time where communication with governments is extremely important, particularly for public health — so you have QAnon turning its attention to vaccinations,” said Smith, who has been studying the intersection of vaccine misinformation and conspiracy theories since the pandemic began. (One of the most popular political conspiracies in the U.S. right now, she noted, is that the vaccines implant a microchip created by Bill Gates for citizen surveillance.)

Monday, December 21, 2020

Hispanic Students and Private Placement


Where the district’s placement offer of a free appropriate public education (FAPE) in the least restrictive environment (LRE) is inappropriate a private school placement may be necessary and the district has to pay.

Ashley Okwuosa and Sharon Lurye of The Teacher Project at USA Today:
Nationally, Hispanic students are consistently the most underrepresented group in terms of accessing private placement. In 2019, the Teacher Project surveyed all 50 states for data on students placed at private special education schools at the public’s expense. Of the 15 states where demographic data was available, Hispanic students were significantly underrepresented in 13 of them. In Texas and California, Hispanic students make up half of the special education population but 29% and 36% of students in private placement, respectively. In Massachusetts, Hispanic students comprise nearly a quarter of the special education population but only 14% of those receiving private placement.

In New Jersey, where the number of Hispanic students has grown rapidly in many communities, the statewide gap is smaller, but that masks stark disparities at the county level. In Camden, half of special education students are Hispanic compared with 15% of those receiving private placement. In Ocean County, one-fifth of special education students are Hispanic compared with only 2% in private placement.

Two main factors cause the gaps: Parents with limited English struggle to navigate their way through a bureaucratic, technical and jargon-laden process – if they even hear about private placement. And very few private schools that serve children with special needs have language support programs.

“Families have to choose between English-as-a-second-language services and special education services,” said Jennifer Rosen Valverde, a professor at Rutgers Law School who focuses on special education.

This became even clearer as the COVID-19 pandemic upended education. Remote learning made it next to impossible for many parents to find special education and language support for their children.

Sunday, December 20, 2020

Politicization of Health and Science

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread Trump has helped spread misinformation.

 S Mo Jones-Jang and Chris Noland have an article at Health Communication titled "The Politicization of Health and Science: Role of Political Cues in Shaping the Beliefs of the Vaccine-Autism Link."  The abstract:

One critical lesson learned from public opinion research about climate change is that the cost of politicization is disastrous. Although the literature has shown the dire consequences of politicized science issues, few have examined how such politicization is possibly triggered by political leaders in a seemingly nonpartisan science topic. Using two experiments (total n = 1,249), this article demonstrates how political cues over scientific expertise shape individuals’ beliefs in the vaccine and autism debate. The results indicate that Republicans tend to follow President Trump compared to scientists in the subject matter. On the other hand, Democrats follow scientists but are not influenced by Trump. The implications of political encroachment into health and science are discussed.

From the article:

Although it was not hypothesized, the findings support the view that conflicting science frames would yield negative public outcomes. We found that participants who were presented with a story in which Trump claimed a vaccine-autism link and scientists said otherwise displayed a decreased behavioral intention for vaccination compared to the control group. This pattern was observed across all partisans. The results for Republicans may not be so surprising because we already found that Republicans chose their political leader over scientists in Study1. However, it is surprising that Democrats decreased their vaccine intention when both scientists and political cues suggest the same thing. The only possible reason would be that exposure to contradicting claims elevated Democrats’ perceived issue uncertainty, leading them to decrease behavioral vaccine intention. Numerous prior studies showed that emphasis on conflicts and false balance in media representations of science issues heightens issue uncertainty and deepens the gap between the public and scientists (Dixon & Clarke, 2013).

...

 The implications of these results presented herein are important. The findings of this study indicate that political cues have transcending effects in nonpartisan science issues, such as the vaccine-autism debate. The results indicate that mere exposure to political cues can trigger science politicization among partisans. The observed influence of political cues is concerning to science and public health communities. The current media environment characterized by partisan outlets and social media make political cues widely available. A growing body of literature also suggests that it is challenging to correct unverified myths and misperceptions once the public cognitively acknowledges their existence (Bernhard & Dohle, 2015; Southwell et al., 2018). Considering that politicization may produce irreversible, devastating consequences in science communication, extra caution should be exercised in the case of politicians’ involvement in science or health issues.


...

Saturday, December 19, 2020

Misinformation and Disinformation

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread Trump has helped spread misinformation.

Davey Alba and Sheera Frenkel at NYT:
NewsGuard, a start-up that fights false stories, said that of the 145 websites in its Election Misinformation Tracking Center, a database of sites that publish false election information, 60 percent of them have also published misinformation about the coronavirus pandemic. That includes right-wing outlets such as Breitbart, Newsmax and One America News Network, which distributed inaccurate articles about the election and are now also running misleading articles about the vaccines.

John Gregory, the deputy health editor for NewsGuard, said the shift was not to be taken lightly because false information about vaccines leads to real-world harm. In Britain in the early 2000s, he said, a baseless link between the measles vaccine and autism spooked people into not taking that vaccine. That led to deaths and serious permanent injuries, he said.

Misinformation creates fear and uncertainty around the vaccine and can reduce the number of people willing to take it,” said Carl Bergstrom, a University of Washington evolutionary biologist who has been tracking the pandemic.

At The New Yorker, Isaac Chotiner talks to Dr. Peter Hotez:

One of the things that seems interesting about anti-vaccine sentiment is that it is a far-right thing in certain ways, but it also crosses certain ideological lines. If you look at some of the places where opposition to vaccinations for children is highest, it’s places like Santa Monica and Marin County, which I don’t think of as part of a right wing—

Yeah, or in Seattle. So there’s a Pacific Northwest flavor to that, which is linked more to the health-and-wellness industry. The point is the anti-vaccine lobby doesn’t all speak with one voice. That’s absolutely true. That’s why I sometimes call it a confederacy more than one single organization. And that gets to the sources of funding as well, which we don’t really understand. Some of it’s coming from the health-and-wellness industry selling fake supplements and autism cures, while a lot of it is getting money from far-right-wing political causes. But it’s gotten very powerful now, to the point it really dominates the Internet.

You alluded to anti-vaccination sentiment rising and falling since colonial times. Is there a through line that can help us understand why sentiment rises or falls, or why distinct populations see sentiment within them rise or fall? Or is it just things like this Lancet paper, about which it would be hard to come up with some sort of historical explanation?

It comes from different causes. So for instance, because I have a daughter with autism, I wrote this book “Vaccines Did Not Cause Rachel’s Autism.” In the book, I report on doing a PubMed search, where you type in key words like autism and vaccines, and you do see one paper comes out of 1976, and a guy who was looking at smallpox vaccination and wondering, “Could there be a link to autism?” And then nothing. And then all of a sudden the Wakefield paper comes, and this thing just blows up after that.

So clearly it’s that Wakefield paper that was the trigger. But what gave it momentum, though, I think, was the political alliances and links. And again, under this banner of health freedom, we’re seeing that stuff expand this year. Because while it was very focussed on vaccines —which, by the way, started bringing people like Rush Limbaugh and Alex Jones into it—in 2020 it glommed on to the protest against masks and social distancing. So what was an anti-vaccine movement then morphed into a full-on anti-science movement.

 

Friday, December 18, 2020

Navy Hires Special Ed Lawyers

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.
The Navy has hired two special education lawyers as part of a three-year pilot program to expand support for service members enrolled in the Exceptional Family Member Program.

The two civilian attorneys, who have a background in special education law, began in November to assist families trying to get services for special needs children through federal laws put into practice differently in school districts across the country, said Lt. Cmdr. Nick Stampfli, legal assistance department head at the Legal Services Office for Mid-Atlantic Region. Navy families can find themselves at a disadvantage when it comes to special education because frequent moves mean they are regularly entering new school districts with different rules and resources.

“We just really want to level the playing field with what a family that doesn’t move often gets,” he said. “We do see a direct impact on readiness when a family is taken care of and sailors are not worrying about a problem at home, especially a problem with their kids. It’s much easier to deploy.”

The Defense Department’s Exceptional Family Member Program, known as EFMP, is a mandatory enrollment program run by the service branches for military members with an immediate family member, usually a child or spouse, who has special medical or educational needs. The program is meant to assist during the orders assignment process to make sure service members are sent to locations where they can access necessary resources.

Thursday, December 17, 2020

Autism Groups Unite Behind Vaccination

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. 

Some groups that are often in conflict with one another have united around a call for vaccination.

From the Autism Society:

The Autism Society of America applauds the global scientific and medical community for developing 95% effective COVID-19 vaccines from Pfizer/BioNTech and Moderna, where Pfizer/BioNTech has already received approval for emergency use authorization (EUA) by the Food and Drug Administration (FDA). The Autism Society enlisted the support of other national disability organizations to unite and urge the autism community to be vaccinated as distribution becomes possible. Individuals with autism and other developmental disabilities are at a greater risk for severe complications and death from COVID-19, especially if they have underlying health conditions or are living in congregate settings. On behalf of signatory groups to this statement, which represent and/or are affiliated with hundreds of thousands of people with intellectual and developmental disabilities (I/DD), we collectively agree that people with autism and I/DD should be included in the group of high-risk diagnoses and prioritized for vaccination.

Ending the pandemic requires a multipronged application of evidence-based strategies while improving health equity: universal face mask use, physical distancing, avoiding nonessential indoor spaces, increasing testing, prompt quarantine of exposed persons, safeguarding those at increased risk for severe illness or death, protecting essential workers, postponing travel, enhancing ventilation and hand hygiene, and achieving widespread COVID-19 vaccination coverage.

The scientific and medical community at large has concluded that the COVID-19 vaccination development process has been conducted with routine processes and procedures in place to maintain sound science and ensure the safety of the global community. Vaccines will be provided in a phased approach, with those at risk of exposure or vulnerable receiving the vaccine first. Children are expected to be the last to be vaccinated, which will allow time for the vaccine clinical trials involving children to provide safety data and confidence in their efficacy in younger populations. As with any medical decision, the Autism Society of America encourages parents, caregivers and autistic individuals to discuss the COVID-19 vaccines with their physicians.

The autism community appreciates the statement from the FDA regarding the safety of the vaccine development, “We are committed to expediting the development of COVID-19 vaccines, but not at the expense of sound science and decision making. We will not jeopardize the public’s trust in our science-based, independent review of these or any vaccines. There’s too much at stake.”

Early testing and research have concluded that the Pfizer/BioNTech and Moderna vaccines worked to about the same degree across all different groups, ethnicities, and genders – including variations in age and underlying conditions. In addition to these two vaccines, several other vaccines are currently being tested and look promising.

We encourage our stakeholders to receive the COVID-19 vaccine because:
  • Anticipated approved vaccines make it significantly less likely you’ll get COVID-19.
  • Getting vaccinated may keep you from getting severely ill if you were to contract COVID-19.
  • Getting vaccinated will help protect vulnerable people around you, including the elderly, people with disabilities, and those with underlying health conditions.

Vaccines work to save millions of lives each year. In addition to receiving the COVID-19 vaccine, being up to date with general vaccinations protects the general health of individuals with autism. Mass COVID-19 vaccination would allow our global community to recover and help stop the pandemic. For the autism community, this means:
  • Individuals in group homes and congregate settings would be able to be reunited with family, friends, and a support network.
  • Educational routines will not require remote learning.
  • Transition to adulthood programs can fully operate to promote independence and supports.
  • Therapies and support services would be able to resume.
  • Respite services for caregivers would be possible.
  • Suffering industries would recover, creating more job opportunities for autistic adults to find gainful employment.

The Autism Society enlisted the help of medical leaders from our Panel of Professional Advisors and Panel of People on the Autism Spectrum to develop and review this statement. In addition, the following organizations signed on in agreement that the autism community should be prioritized for COVID-19 vaccination, and attempt to get vaccinated as soon as possible.

Autism Society of America

Autism Society Panel of Professional Advisors

Autism Society Panel of People on the Spectrum of Autism

Autism Science Foundation

American Association on Intellectual and Developmental Disabilities

Autistic Reality

Autistic Self Advocacy Network

Autism Speaks

Autistic Women & Nonbinary Network

CommunicationFIRST

Jefferson University Hospitals

Easter Seals

National Association of Councils on Developmental Disabilities

National Association of State Directors of Developmental Disabilities Services

National Council on Severe Autism

National Down Syndrome Congress

National Down Syndrome Society

National Respite Coalition

The Partnership for Inclusive Disaster Strategies

Tuberous Sclerosis Alliance
Resources:

FDA: https://www.fda.gov/emergency-preparedness-and-response/coronavirus-disease-2019-covid-19/covid-19-vaccines#basics and https://www.fda.gov/emergency-preparedness-and-response/coronavirus-disease-2019-covid-19/pfizer-biontech-covid-19-vaccine

Who: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/covid-19-vaccines

CDC: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations-process.html and https://www.cdc.gov/mmwr/volumes/69/wr/mm6949e2.htm?s_cid=mm6949e2_w

Pfizer: https://www.pfizer.com/news/press-release/press-release-detail/pfizer-and-biontech-conclude-phase-3-study-covid-19-vaccine

Moderna: https://investors.modernatx.com/news-releases/news-release-details/moderna-announces-primary-efficacy-analysis-phase-3-cove-study

ScienceMag: https://www.sciencemag.org/news/2020/11/absolutely-remarkable-no-one-who-got-modernas-vaccine-trial-developed-severe-covid-19