But some public health experts argue that agencies are still failing on messaging. Scientific terms such as “mRNA technology,” “bivalent vaccine” and “monoclonal antibodies” are used a lot in public health, even though many people find them difficult to understand.
A study published by JAMA found that Covid-related language used by state-level agencies was often more complex than an eighth-grade reading level and harder to understand than the language commonly used by the CDC.
“We have to communicate complex ideas to the public, and this is where we fail,” said Brian Castrucci, CEO of the de Beaumont Foundation, a charitable group focused on strengthening public health. “We have to own the fact that our communication missteps created the environment where disinformation flourished.”
Most Americans support public health, Castrucci said. At the same time, a small but vocal minority pushes an anti-science agenda, and it has been effective in sowing seeds of distrust, he said.
The more than 3,000 public health departments nationwide stand to benefit from a unified message, he said. In late 2020, the foundation, working with other public health groups, established the Public Health Communications Collaborative to amplify easy-to-understand information about vaccines.
“The good guys need to be just as well organized as those who seek to do harm to the nation,” he said. “One would think we would learn from this.”
I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at firstname.lastname@example.org
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Saturday, December 31, 2022
Public Health Communication
Friday, December 30, 2022
Questions about Special Ed in NYC Orthodox Schools
Less than a decade ago, New York City drastically changed the way it provided special education to thousands of children with disabilities.
State law requires cities to deliver those services to students in private schools, even if the government has to pay outside companies to do it. But for years, when parents asked, New York City officials resisted and called many of the requests unnecessary.
In 2014, Mayor Bill de Blasio changed course. Responding to complaints, especially from Orthodox Jewish organizations, he ordered the city to start fast-tracking approvals.
The policy has made it easier for some children with disabilities to get specialized instruction, therapy and counseling. But in Orthodox Jewish religious schools, particularly in parts of the Hasidic community, the shift has also led to a windfall of government money for services that are sometimes not needed, or even provided, an examination by The New York Times has found....Five hearing officers told The Times that in proceedings involving Hasidic children, some parents have not seemed to know what they were requesting, or why. In one case, a mother could not explain her son’s disability, records show.
The Chabad Girls Academy, a Hasidic yeshiva in Crown Heights, sent an email to one mother in 2020 that said her daughter would qualify for autism treatment and provided her with a sample prescription for the child’s doctor, according to a copy of the message obtained by The Times. “Please can you have her medical doctor write a prescription stating diagnosis of F84.0,” the email said. “This is what we need.”
The mother told The Times her child does not have autism.A lawyer for the school, Jules Halpern, said the school never pressed to get any child diagnosed with autistic disorders. “Email exchanges with this parent or any other would clearly demonstrate a dedicated educator working diligently and completely in the interest of the student,” he said.
Thursday, December 29, 2022
Vaccines Don't Cause Autism
Myths regarding the measles, mumps and rubella (MMR) vaccine and its debunked link to autism persist as reasons some parents put off vaccinating their children. This has contributed to a recent measles outbreak that began in Franklin County before spilling over to other counties, including infecting an infant in Clark County.
“(The MMR vaccine) has been very safe since it was given out in the 60s,” said Dr. Sara Guerrero-Duby, a pediatrician at Dayton Children’s Pediatrics.
...Subsequent studies have shown there is no link between vaccines and autism spectrum disorder, including a 2013 study in the Journal of Pediatrics. This study involved 256 children with autism spectrum disorder and 752 control children. The study found that increasing exposure to antibody-stimulating proteins and polysaccharides in vaccines during the first two years of life was not related to the risk of developing an autism spectrum disorder.
Guerrero-Duby said one of the definitive studies involving vaccines and autism was one done in 1999 by the researcher Brent Taylor and his colleagues, also published in The Lancet. This epidemiological study sought to see if there was a causal association between the MMR vaccine and autism by studying children with autism born since 1979 as the MMR vaccine was not introduced in the UK until 1988. The study found no sudden “step-up” or change in the percentage of autism cases after the introduction of MMR vaccination.
There was also a Danish study published in the New England Journal of Medicine that was a retrospective cohort study of all children born in Denmark from January 1991 through December 1998. The study found the occurrence of autism was the same in both unvaccinated children and vaccinated children.
“Over 20 years, the definitive study proving that there was no connection to autism has been out there, and people still want to cling to misinformation, because they’re afraid, and we try to dispel their fear, but we do know people are afraid,” Guerrero-Duby said.
Mohammed SA, Rajashekar S, Giri Ravindran S, Kakarla M, Ausaja Gambo M, Yousri Salama M, Haidar Ismail N, Tavalla P, Uppal P, Hamid P. Does Vaccination Increase the Risk of Autism Spectrum Disorder? Cureus. 2022 Aug 12;14(8):e27921. doi: 10.7759/cureus.27921. PMID: 36110492; PMCID: PMC9464417.Abstract:
Autism spectrum disorder (ASD) is a developmental disorder that can cause significant social, communicative, and behavioral difficulties. With autism rates rising dramatically in recent years, researchers and concerned parents have theorized the causes of autism, and the subject has received much attention. Is the high rate of autism now due to increased diagnosis and reporting, changing autism definitions, or a rise in the number of people with ASD? People started to blame vaccines as a cause of the increased number of people with ASD. Vaccines and their connection to autism have been the subject of continuous debate. Some parents are concerned that vaccines, particularly the measles-mumps-rubella (MMR) vaccine and preservatives used in other childhood vaccines, may play a role in developing autism in their children. This systemic review explores the link between vaccination and autism in children. We conducted a literature search using PubMed and Google Scholar. We included papers written in the English language from 1998 to 2022, conducting human research that examines the relationship between vaccination and the development of autism using appropriate quality assessment tools. Two reviewers independently reviewed the content of the included studies. In total, 21 studies were deemed eligible.Conclusion:
According to our review, there is no link between the development of ASD and immunization. The dramatic increase in the prevalence of ASD created widespread concern. Many theories have been offered to explain the link between vaccination and the development of autism, including changes in immune system function, abnormal organic acid synthesis, mercury toxicity, the effects of gliamorphin on cerebral function, and the link between MMR and autism. However, all these theories remain theoretical, and our review finds no evidence of a link between them and the development of autism. Parents experienced vaccination reluctance following the release of the Wakefield study on the supposed MMR vaccine-autism relationship. It raises concern and challenges vaccine acceptance among parents, leading to the re-emergence of vaccine-preventable diseases. It still raises concern in some parents; we recommend that public health officials continue to advocate and encourage vaccination. The public may require more studies to rule out the association between ASD and vaccination.
Wednesday, December 28, 2022
Visalia, CA: Certified Autism Destination
In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families -- as well as efforts to mitigate them.
Visalia has been designated the first-ever Certified Autism Destination in the country, awarded by the International Board of Credentialing and Continuing Education Standards (IBCCES). This follows a year-long effort by local tourism partners to better address the travel needs of autistic adventurers and their families in the destination. Recent studies conducted by Autism Travel show that 87% of parents with an autistic child do not travel, but 93% would be more likely to if autism certified options were available. Now, travelers can enjoy inclusive and accessible travel to Visalia and the nearby Sequoia & Kings Canyon National Parks.
Visit Visalia, the city’s destination marketing organization, launched the city-wide initiative just over a year ago to encourage its key tourism-focused partners to participate in the specialized autism training program and become Certified Autism Centers. The training is designed for front-facing hospitality and service staff to better recognize and respond to the needs of travelers with autism spectrum disorder (ASD). With 42% of the city’s key hotels and several family-friendly attractions certified, Visalia earned its designation as a Certified Autism Destination.
In addition to extensive training, Visalia’s tourism businesses are providing accommodations such as adding sensory guides, signage, introducing quiet spaces, low-sensory nights, and more. For example, the city is hosting three sensory-friendly holiday events this year and the ImagineU Children’s Museum created sensory-friendly nights once a month beginning in September and resuming in the new year.
“Visalia’s autism certification underscores California’s commitment to welcoming all dreamers and is an inspiration to other destinations seeking to be inclusive to travelers of all abilities,” said Caroline Beteta, President and CEO of Visit California. “Visalia is featured as an ‘Autism-Friendly California Adventure’ in Visit California’s Road Trips guide. The city is a picturesque destination for families and the perfect base camp when experiencing the biggest trees on Earth in nearby Sequoia National Park.”
IBCCES is a global leader in online training and certification programs. IBCCES created AutismTravel.com to serve as a free resource for families looking for trained and certified travel and recreation options. Each organization listed on the site, like Visit Visalia, has met the Certified Autism Center™ (CAC) requirements.
The city’s inclusive efforts extend beyond this designation to include the “Hidden Disabilities Sunflower” program, where Visit Visalia offers sunflower lanyards and bracelets complimentary to travelers, upon request. When worn, the sunflower serves as a visual cue to trained hospitality staff throughout Visalia that a traveler may need additional support during their visit.
Travelers can view the complete list of Visalia’s Certified Autism Centers and learn more about this initiative at https://www.visitvisalia.com/autism-travel-. For more information on inclusive and accessible travel to Visalia and the nearby Sequoia & Kings Canyon National Parks, go to visitvisalia.com/accessible-travel.
Tuesday, December 27, 2022
Dearth of Autism Research in Low-Income Countries
Autism spectrum disorder (ASD) prevalence is rising  at different paces. The reported prevalence currently lies between 0.9% and 1.5% . In affluent and high-income countries, a higher speed is reported compared to a slower pace in developing countries . A recent worldwide ASD prevalence estimate of 0.6% falls far below estimates for Western developed societies. This reported difference probably reflects an inability to diagnose due to the shortage of available diagnostic services rather than a natural worldwide variation in the incidence of ASD in its different forms . There are various contributing factors to the reported difference. It reflects inequality in broadening the diagnosis services and different levels of awareness among countries and multiple degrees of endeavor for identification among children primarily. Hence, the increasing international wealth of information on ASD is based mainly on numerous studies conducted in developed, affluent countries . As de Leeuw et al.  indicated, “Autism research is heavily skewed towards western high-income countries”.
More attention should be considered to the presence of similarities and differences in the representation and the influence of ASD in different world regions and between different cultures and minority groups. Still, the available wealth of data remains limited in low-and-middle-income countries (LMICs) and among immigrants and minority groups in high-income countries (HICs). In many ways, there is considerable overlap between the situation for individuals with ASD in LMICs and HICs . There are similar challenges for this group of individuals and their family members and caregivers in both country groups. Hence, there are additional cultural, political, and economic challenges pertaining to LMICs . There are different aspects of ASD that have been understudied, and investigating their impacts on particular groups of individuals is missed in LMICs and HICs. It seems that healthcare policymakers were not entirely convinced to consider these research aspects and allocate strategies and resources for them. There are various reasons for this neglect; still, factors such as lack of suitable instruments for detection and diagnosis, lower levels of awareness and practiced stigma affecting demand for ASD caregiving and the dominance of specialist models for diagnosis and treatment, and finally, the high cost of researching ASD contributed to this imbalance in LMICs . There are understudied groups in the ASD population, such as groups with ASD and other developmental disabilities , and aspects of the life of individuals with ASD, such as their sexual development  in HICs.
Monday, December 26, 2022
Measles Outbreak in Ohio
A rapidly growing measles outbreak in Columbus, Ohio — largely involving unvaccinated children — is fueling concerns among health officials that more parent resistance to routine childhood immunizations will intensify a resurgence of vaccine-preventable diseases.
Most of the 81 children infected so far are old enough to get the shots, but their parents chose not to do so, officials said, resulting in the country’s largest outbreak of the highly infectious pathogen this year.
“That is what is causing this outbreak to spread like wildfire,” said Mysheika Roberts, director of the Columbus health department.
The Ohio outbreak, which began in November, comes at a time of heightened worry about the public health consequences of anti-vaccine sentiment, a long-standing problem that has led to drops in child immunization rates in pockets across the United States. The pandemic has magnified those concerns because of controversies and politicization around coronavirus vaccines and school vaccine mandates.
Some of the cases occurred in Columbus’s large Somali community, the second-largest Somali population in the United States after the Minneapolis area, Roberts said. Parents have said they “intentionally delayed” giving their children the measles vaccine because of their fear of autism, she said, despite considerable research disproving any relationship between vaccines and autism. Those fears echoed similar concerns of parents in Minnesota’s Somali community during a 2017 measles outbreak that infected 75 children, mostly unvaccinated preschool kids.
Sunday, December 25, 2022
Disability Employment After the Pandemic
In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.
Ari Ne'eman and Nicole Maestas, "How Has COVID-19 Impacted Disability Employment?" NBER Working Paper No. 30640 November 2022 JEL No. I18,J01,J1. Abstract:
While the COVID-19 public health emergency has had disastrous health impacts for people with disabilities, it remains unclear what impact the associated economic recession and subsequent recovery have had on disability employment. Objective: We evaluated employment trends for people with and without disabilities over the course of the COVID-19 recession and subsequent economic recovery, both overall and by occupational category (essential, non-essential, teleworkable, non-teleworkable, frontline, nonfrontline). We made use of data from the nationally representative Current Population Survey. Linear probability models were used to estimate percent changes in employment-to-population ratios and identify differences between disabled and non-disabled employment in each quarter broadly and within specific occupational categories. As the COVID-19 recession began in Q2 2020, people with disabilities experienced employment losses that were proportionately similar to those experienced by people without disabilities. However, during the subsequent economic recovery, the employment rate of people with disabilities has grown more quickly in Q4 2021 through Q2 2022, driven by increased labor force participation. These employment gains have been concentrated in teleworkable, essential, and non- frontline occupations. Our findings suggest that people with disabilities are disproportionately benefiting from the rapid recovery from the initial economic contraction at the start of the pandemic.
Saturday, December 24, 2022
Party and Vaccination
Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers. Even before COVID, they were fighting vaccine mandates and other public health measures.
What we do have is a patchwork of estimations and correlations that, taken together, paint a blurry but nevertheless grim picture of how Republican leaders spread the vaccine hesitancy that has killed so many people. We know that as of April 2022, about 318,000 people had died from COVID because they were unvaccinated, according to research from Brown University. And the close association between Republican vaccine hesitancy and higher death rates has been documented. One study estimated that by the fall of 2021, vaccine uptake accounted for 10 percent of the total difference between Republican and Democratic deaths. But that estimate has changed—and even likely grown—over time.Partisanship affected outcomes in the pandemic even before we had vaccines. A recent study found that from October 2020 to February 2021, the death rate in Republican-leaning counties was up to three times higher than that of Democratic-leaning counties, likely because of differences in masking and social distancing. Even when vaccines came around, these differences continued, Mauricio Santillana, an epidemiology expert at Northeastern University and a co-author of the study, told me. Follow-up research published in Lancet Regional Health Americas in October looked at deaths from April 2021 to March 2022 and found a 26 percent higher death rate in areas where voters leaned Republican. “There are subsequent and very serious [partisan] patterns with the Delta and Omicron waves, some of which can be explained by vaccination,” Bill Hanage, a co-author of the paper and an epidemiologist at Harvard, told me in an email.
But to understand why Republicans have died at higher rates, you can’t look at vaccine status alone. Congressional districts controlled by a trifecta of Republican leaders—state governor, Senate, and House—had an 11 percent higher death rate, according to the Lancet study. A likely explanation, the authors write, could be that in the post-vaccine era, those leaders chose policies and conveyed public-health messages that made their constituents more likely to die. Although we still can’t say these decisions led to higher death rates, the association alone is jarring.
Frank Han at Science-Based Medicine:
Senator Ron Johnson, the Republican senator from Wisconsin, convened a round table with various actors known to be active in the anti-vaccine ecosystem with the premise that they would increase awareness of vaccine injury. This is not the first time he has done such a session, however the way that this session was put together does very little, if anything, to assist actual patients on their way to recovery. This is meant to advise the reader on how Sen. Johnson’s December 2022 roundtable was deceptive and used to push an agenda.
Friday, December 23, 2022
Antisemitism and the Antivax Movement
In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread. Examples include measles, COVID, flu, and polio.
At Moment, Jennifer Bardi interviews Dr. Peter Hotez:
The Anti-Defamation League presented you with the 2021 Milton S. Popkin Award, recognizing your efforts to combat antisemitism and its links to the anti-vaccine movement. Can you talk about those links and how it became a political force?
The anti-vaccine movement started with false assertions that vaccines cause autism, and that revved up in the early 2000s. Then, about ten years ago, it pivoted to become a political movement linked to the Republican Tea Party’s concept of health freedom, or medical freedom. That’s when the first anti-vaccine political action committees were set up in Texas and other states to support far-right candidates who pushed health freedom propaganda, mostly linked to vaccines. During COVID-19, the movement expanded beyond childhood vaccinations to COVID vaccinations and other COVID prevention measures. That’s when it gained a lot of political strength and when you started to see the health freedom/medical freedom movement adopted by the House Freedom Caucus in the U.S. Congress, amplified on Fox News by senators like Rand Paul and Ron Johnson. Every night Fox News was spewing out rhetoric claiming vaccines were not effective or they weren’t safe. You started to see the white nationalist Proud Boys marching at anti-vaccine rallies. And, in fact, the first arrests in the January 6th insurrection included anti-vaccine activists. There became a very tight link between far-right extremism and anti-vaccine/anti-science rhetoric.
And with that came antisemitism?
Antisemitism was always part of the far right, and here it manifested in two forms: One, there were direct antisemitic threats against Jewish doctors and Jewish scientists. More commonly, however, anti-vaxxers were invoking Nazi-era imagery and statements…kind of to mess with your head. These people would not only compare vaccines to the Holocaust but would claim that vaccines were a violation of agreements made at Nuremberg, along with requests to see doctors hanged or executed after Nuremberg-style trials. They would compare people like myself or Anthony Fauci to Josef Mengele. So, there were direct antisemitic threats, but it was more commonly the heavy use of Nazi imagery that I interpreted as a form of intimidation.
Intimidation to what end? Is this tied to the antisemitic conspiracy theories asserting that Jews unleashed the virus and created vaccines to protect only Jewish people, or that the vaccine is being pushed on non-Jews as some sinister form of control?
I’m glad you brought that up. It’s the third element, which is that the Jews were behind either creating COVID or creating COVID vaccines, which are dangerous. On social media and in emails, I get accused of plotting to make the virus because I’m Jewish. The fact is, a lot of vaccine scientists are Jewish, so conspiracy theorists make that leap.
Thursday, December 22, 2022
Calley on Restraint and Seclusion
I have a daughter with autism. When I first heard about this practice, I thought it must be rare. But it is shockingly common, having been used against tens of thousands of U.S. students in recent years.
In Michigan alone, where my family resides, restraint and seclusion was used in schools more than 94,000 times from 2017 to 2022. Because there are no penalties issued to schools for failing to report, this number is undoubtedly an undercount. An Education Department analysis covering the 2017-2018 school year (based on self-reporting) showed that more than 100,000 children across the United States had been subjected to these inhumane practices.
...It was clear this was a major problem. So, my office developed a proposal to ban restraint and seclusion in non-emergency situations. In 2016, I signed legislation that did just that, and that required schools to report to parents and the Michigan Department of Education when the practice was used, so we could track its prevalence. The resulting data revealed a situation that was even worse than I feared.
At the Detroit Free Press, however, Dave Boucher and Lily Altavena report that implementation has not been entirely successful:
While Michigan lawmakers tried to ban the tactics in 2016, a Free Press investigation found educators across the state secluded or restrained students nearly 94,000 times in the last five school years. The state began collecting data in the 2017-18 school year following the passage of new laws.
That means on average, more than 100 times a day, Michigan educators used what experts say are psychologically damaging practices on children. Considering most schools limited or canceled in-person classes for weeks or months due to the COVID-19 pandemic, the daily usage of both seclusion and restraint are likely much higher.
Wednesday, December 21, 2022
Autism and Policy Advocacy
In The Politics of Autism, I discuss the policy advocacy by autistic people, family members, and allies.
A spirited and passionate roundtable conversation about the vital importance of policy advocacy. Featuring:
Tuesday, December 20, 2022
Autism and Antidepressant Use During Pregnancy
In The Politics of Autism, I discuss various ideas about what causes the condition.
There is a very long and growing list of other correlates, risk factors, and possible causes that have been the subject of serious studies:
A release from the University of Virginia:
Antidepressant use during pregnancy may combine with inflammation to heighten the risk of lifelong neurodevelopmental changes in babies' brains, such as those linked to autism, new research from the University of Virginia School of Medicine suggests.
A team of UVA neuroscientists found that commonly used antidepressants known as selective serotonin reuptake inhibitors (SSRIs) can interact powerfully with inflammation in the mother's body from infections or other sources. In lab mice, this interaction caused harmful changes in the placenta and the decidua – the direct connection between mother and child – and affected the developing brain.
Zengeler, K.E., et al. (2022) SSRI treatment modifies the effects of maternal inflammation on in utero physiology and offspring neurobiology. Brain Behavior and Immunity. doi.org/10.1016/j.bbi.2022.10.024.
NOTE, HOWEVER THAT ANOTHER RECENT STUDY DOES NOT FIND A RELATIONSHIP.
Monday, December 19, 2022
Measles in Ohio
The number of children who have fallen ill with measles in and around Columbus has grown slowly but steadily since the first four cases were reported by the Columbus health department at the beginning of November.
While there are still no reported cases in the Cleveland area, the recent Ohio measles outbreak - which so far has been limited entirely to unvaccinated or partially vaccinated children - has some doctors raising concerns that go beyond measles.
They say a combination of a complacency about diseases most people in the U.S. have rarely seen up close, and the heated debate around COVID-19 vaccinations, has sown seeds of confusion and misinformation about the safety, effectiveness and necessity of vaccines for other childhood diseases.
These small outbreaks, say doctors, should serve as a reminder of the importance of timely vaccinations in young children, because even a single exposure could be devastating in settings like daycares with rooms full of babies too young to be vaccinated. Measles is a highly contagious virus, with 90% of unvaccinated people exposed getting sick.
“Measles and polio and meningitis ... these are very serious diseases that we do not want to see come back,” said Dr. Camille Sabella, a specialist in pediatric infectious diseases at the Cleveland Clinic. “Vaccines have basically eliminated those childhood diseases.”
Seventy-seven cases of measles were reported Central Ohio from Nov. 9 through Friday.
Sunday, December 18, 2022
Autism and Digital Services
“If you’re a tech company like Airbnb and you have venture capital, your mentality is typically, ‘grow, grow, grow,’” said Sarah Trautman, CEO of defy community, a company focused on preventing burnout among clinicians. “They don’t care if you’re running a huge deficit, they just want to get to scale and add in profit later…The issue that I think people are failing to consider is this requires human capital, and it really requires a ton of human capital.”
The money flowing into autism care has been plentiful. According to Digital Health Business & Technology’s funding database, more than $700 million in venture money has gone into autism-focused digital health startups since 2017. There have been 28 deals, including 17 in the last two years. That includes a $219 million round for Elemy in October 2021, a $105 million round for Brightline in March and a $60 million round for Cortica in June 2021. While most of these startups companies are singularly focused on autism, others like Brightline and Cortica aim to reach multiple patient populations.
One key reason for investor interest in the space is that every state has enacted a mandate requiring insurance carriers to cover services for autism spectrum disorder. Jonathan Mueller, CEO of Element RCM, a revenue cycle management company for autism service companies, said the funding trends follows what’s happened in other areas of medicine, such as home health and hospice care, after they were made reimbursable through insurance.
Aaron Blocher-Rubin, founder and CEO of Arizona Autism United, a community-based nonprofit that provides ABA and other services to families, and other critics have concerns over the virtualized board-certified behavioral analyst model. “Autism is way too complex. Therapists are way too underqualified to be expected to [only receive virtual support]. There’s no research on a model like this,” he said.