Good News: GoFundMe Cuts Off Antivax Appeals. Bad News: Michigan Measles

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.

Julia Arciga at The Daily Beast:

Anti-vaxxers have long used GoFundMe to raise money to spread their dangerous message—but now the site is cutting them off, The Daily Beast has learned.

“Campaigns raising money to promote misinformation about vaccines violate GoFundMe’s terms of service and will be removed from the platform,” spokesman Bobby Whithorne told The Daily Beast.

“We are conducting a thorough review and will remove any campaigns currently on the platform.”

It’s the latest crackdown on fact-challenged activists who believe the medical establishment, the government, and the pharmaceutical industry are engaged in a conspiracy to hurt American children.

The U.S. anti-vax movement has been blamed for two outbreaks of measles that have infected some 300 people—mostly children—in New York and the Pacific Northwest.

A release from Oakland County, Michigan:

The three measles cases under investigation in Thursday’s press release are now confirmed. Michigan Department of Health and Human Services and Oakland County Health Division confirmed the positive results today. This brings the total measles cases confirmed in Oakland County since March 13 to eight.“

Antivax Grifters and Bullies

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.

Anna Merlan at Jezebel:

A deep dive into the world of Generation Rescue has revealed that the organization doesn’t just promote ineffective or medically unproven or downright debunked treatments for autism (all of which has been demonstrated before): The organization and the people associated with it profit from them, too. In two cases, Generation Rescue has heavily promoted products owned by past board members, at the time they served on the board: hyperbaric oxygen chambers and B12 lollipops, both of which have been presented on GR’s website as near-miraculous treatments for symptoms of autism.

In another case, Generation Rescue has lavishly praised and promoted products made by a corporate sponsor—the maker of a ionic footbath that supposedly “cleanses” “toxins” from the body—without directly revealing the company’s business relationship with GR. Families can also apply for “grants” from Generation Rescue, which funnels them into receiving treatment—and buying more products—from handpicked naturopathic doctors and GR partner organizations. (As of March 2019, Generation Rescue says on their site that applications to the grant program are temporarily closed while they update “critical pieces” of the program.)

Elizabeth Cohen and John Bonifield, at CNN

Interviews with mothers who've lost children and with those who spy on anti-vaccination groups, reveal a tactic employed by anti-vaxers: When a child dies, members of the group sometimes encourage each other to go on that parent's Facebook page. The anti-vaxers then post messages telling the parents they're lying and their child never existed, or that the parent murdered them, or that vaccines killed the child, or some combination of all of those.

Nothing is considered too cruel. Just days after their children died, mothers say anti-vaxers on social media called them whores, the c-word and baby killers.

The mother in the Midwest, who wants to remain anonymous, isn't alone.

Jill Promoli, who lives outside Toronto, lost her son to flu. She believes the anti-vaxers are trying to silence the very people who can make the strongest argument for vaccinations: those whose children died of vaccine-preventable illnesses.

Antivax Misinformation Keep Spreading, and Not Just About Autism

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.

Oliver Darcy at CNN Business:

Facebook on Thursday morning continued to recommend content in the search bar that linked vaccinations with autism, a CNN Business review showed. When searching for "vaccines" using the search tool, results included "vaccines and autism" and "vaccinesrevealed." When clicked, the suggestions in the drop-down menu returned results for Facebook pages that spread vaccine misinformation.

On Instagram, the problem was also still widespread, as first pointed out by The Atlantic's Taylor Lorenz in a Thursday story about misinformation on the platform. Pages recommended when CNN Business searched for vaccines included accounts such as "VACCINES UNCOVERED," "Vaccine Cautious Mom," "Vaccines Exposed," and others. When searching for hashtags, the top results was "#vaccineskill," which had more than 17,000 posts. Others included "#vaccineinjury," "#antivaccine," and "#vaccinescauseautism."

A spokesperson speaking on behalf of both Instagram and Facebook told CNN Business on Thursday afternoon that the process of curbing the dissemination of vaccine misinformation has always been scheduled to take place over several weeks. The spokesperson called the effort a "long-term commitment."

At Vaccine, Beth Hoffman and colleagues have an article titled "It’s Not All About Autism: The Emerging Landscape of Anti-vaccination Sentiment on Facebook,"  The abstract:

Background: Due in part to declining vaccination rates, in 2018 over 20 states reported at least one case of measles, and over 40,000 cases were confirmed in Europe. Anti-vaccine posts on social media may be facilitating anti-vaccination behaviour. This study aimed to systematically characterize (1) individuals known to publicly post anti-vaccination content on Facebook, (2) the information they convey, and (3) the spread of this content.

Methods: Our data set consisted of 197 individuals who posted anti-vaccination comments in response to a message promoting vaccination. We systematically analysed publicly-available content using quantitative coding, descriptive analysis, social network analysis, and an in-depth qualitative assessment. The final codebook consisted of 26 codes; Cohen’s j ranged 0.71–1.0 after double-coding.

Results: The majority (89%) of individuals identified as female. Among 136 individuals who divulged their location, 36 states and 8 other countries were represented. In a 2-mode network of individuals and topics, modularity analysis revealed 4 distinct sub-groups labelled as ‘‘trust,” ‘‘alternatives,” ‘‘safety,” and ‘‘conspiracy.” For example, a comment representative of ‘‘conspiracy” is that poliovirus does not exist and that
pesticides caused clinical symptoms of polio. An example from the ‘‘alternatives” sub-group is that eating yogurt cures human papillomavirus. Deeper qualitative analysis of all 197 individuals’ profiles found that these individuals also tended to post material against other health-related practices such as water fluoridation and circumcision.

Conclusions: Social media outlets may facilitate anti-vaccination connections and organization by facilitating the diffusion of centuries old arguments and techniques. Arguments against vaccination are diverse but remain consistent within sub-groups of individuals. It would be valuable for health professionals to leverage social networks to deliver more effective, targeted messages to different constituencies.

Hiding Restraint and Seclusion

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

Jenny Abamu at WAMU-FM:

For years, Fairfax County Public Schools reported to the federal government that not a single student was physically restrained or trapped in an isolating space.

But documents obtained by WAMU reveal hundreds of cases where children, some as young as 6 years old, were restrained or put in seclusion multiple times. In some cases, a single child was confined to a room almost 100 times in a school year.

 Fairfax County guidelines say this technique is used as a last resort — if a student is considered a danger to themselves or others. But parents of students who were repeatedly secluded or restrained say they felt that school officials used these methods as a first response.

When asked why Fairfax school officials reported zero cases in 2009, 2013 and 2015, despite documentation showing otherwise, a spokesperson replied there was no requirement for the district to report the data to the state. Fairfax County Public Schools also said there was “internal miscommunication about data reported to [Office of Civil Rights] which has been corrected” and “data that was being reported had not been properly reviewed,” in a statement after repeated inquiries from WAMU.

Hearing on Seclusion and Restraint

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

From the US House Education and Labor Committee:

"Classrooms in Crisis: Examining the Inappropriate Use of Seclusion and Restraint Practices."
Early Childhood, Elementary and Secondary Education

Date: Wednesday, February 27, 2019Time: 10:00 AMLocation: Washington, D.C. 20515 2175 Rayburn House Office Building

Agenda
Watch the hearing
Member Statements
Gregorio Kilili Sablan (Democrat - Northern Mariana Islands)
Download Statement

Witnesses
Mr. George Sugai, Ph.D.
Professor And Carole J. Neag Endowed Chair
Neag School of Education, University of Connecticut
Storrs , Connecticut
Download Testimony
SugaiDisclosure

Mrs. Renee Smith
Coventry , Rhode Island
Download Testimony
Smith Disclosure

Ms. Jacqueline Nowicki
Director Of Education Workforce And Income Security
Government Accountability Office (GAO)
Washington , D.C.
Download Testimony
Nowicki Disclosure

Ms. Allison Sutton, M.Ed
Special Education Teacher
Wichita Public Schools (USD 259)
Wichita , Kansas
Download Testimony
Sutton Disclosure

Censorship or Quality Control?

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.

Lindsey Bever at WP:

Art Caplan, a professor of bioethics and head of the division of medical ethics at New York University School of Medicine, said companies cannot allow themselves to be “vehicles for misinformation contagion.”

“You can certainly post things that oppose vaccination — individuals can speak their minds. But when you have websites that are presenting false information, debunked information or, similarly, books that tout phony cures, I think there is a role for somebody in censorship,” said Caplan, who co-authored a 2017 paper on “The overlooked dangers of anti-vaccination groups’ social media presence.” Caplan said that it is important for companies to exclude such misinformation “because the power of social media, particularly in the vaccine space, is so strong that it’s leading to fear of vaccines, which is leading to epidemics, which is putting people at risk.”
...
Joe Holt, a business ethics professor at the University of Notre Dame, said the problem with businesses being forced to play a censorship role is that most of them, if not all of them, probably never intended to do that. But now, he said, “there’s more and more external pressure for them to do more censoring.

The Cheating Scandal and Students on the Spectrum

In The Politics of Autism, I discuss the growing number of college students on the spectrum. The recent college admissions scandal is a blow to them.

Ryan W. Miller at USA Today:

When Veronica Soliz's son took the SAT, he was granted an hour and a half of extra time for the entire test through a disability accommodation.

Soliz, mother of an autistic child, said she was thankful he got that, not realizing then that they could have asked for more time.

When she read the news Tuesday that children of TV celebrities and wealthy elites had been granted twice the amount of time her son got for disabilities they allegedly fabricated, she was in disbelief.
...

"To see that somebody just paid for what we've been dealing with his whole life, it was just a gut punch," Soliz said. "It's way too hard for us to get what we need and way too easy for people like Felicity Huffman."

...
Nadine Finigan-Carr and her son, who has autism, started the process in February of his junior year.

He didn't have an updated plan on record because he attended a private school. The family had to find specialists, sit for the necessary tests and complete the various forms needed to send to the College Board and ACT.

It wasn't until summer that Finigan-Carr's son was approved for the accommodations he needed. By then, he could take the tests only once in the fall, unlike many of his peers who took the tests multiple times to try to improve their scores.

"This was not something that we just got somebody to sign a piece of paper to do," Finigan-Carr said.

Services Shortage in Nevada

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

At The Nevada Independent, Michelle Rindels and Jacob Solis explain why Nevada autism families face long waits and a shortage autism services.

The number of providers is one limiting factor, and something that lawmakers tried to address through bills last session. The number of Medicaid-accepting registered behavioral technicians (RBTs) — the people who work directly with children with autism — has grown from 145 in early 2017 to 535 by late 2018.

But the number of board certified behavioral analysts (BCBAs), who supervise RBTs, has grown at a slower rate, from 26 to 53 statewide. Part of that is because it takes several years to earn a BCBA certification but only 40 hours to earn the RBT certification.

“There’s a need for more providers to participate in Medicaid. And … the economics of the situation suggest that … there is an overall shortage,” said Cody Phinney, pointing to long wait times to find a provider. “And there are providers that have made it clear that they don’t have to participate in Medicaid because there’s so much demand outside of Medicaid.”

Many people blame the shortage on the rate that Medicaid reimburses providers for the services of RBTs. The rate is $31.30 per hour — significantly lower than the $52 per hour that TriCare (military insurance) pays and lower than many neighboring states.

By the time a provider pays for a supervisor, insurance, workman’s compensation, employment taxes and other overhead, many of the actual RBTs are making a starting wage of $12 an hour.

“Not only does the job require training, but it is a demanding and intense job that may include working with individuals who are physically aggressive,” said Gwynne Partos, vice chair of the Nevada Commission on Autism Spectrum Disorders.

One RBT who testified to lawmakers said he wanted to keep serving his clients, but found that with all the driving he had to do to three far-flung clients’ homes in a given day, he could make more driving for Uber and Lyft. Another autism service provider lamented the high turnover in the job, saying she was frustrated to see a sign on a recent visit to In-N-Out saying the burger chain offered starting wages of $12 with earning potential for $15.75.

The article also discusses the state's autism court.

Cites Are Susceptible to Measles and Antivax Misinformation

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.

Dr. Peter Hotez at Axios:

Between Jan. 1 and March 7, the CDC confirmed 228 cases of measles across 12 states.

Why it matters: These outbreaks — which have been especially large in Washington, Oregon and Texas — were predictable. A 2018 study of vaccination rates identified a dozen likely hotspots, two of which have now seen eruptions of this preventable illness.
Show less

Background: The current anti-vaccine movement began more than 20 years ago after a paper published in The Lancet(but later retracted) claimed that the measles-mumps-rubella vaccine could be linked to autism.

Where it stands: Since then it's spawned a media empire that includes almost 500 anti-vaccine websites, each amplified on social media. Almost all of Amazon's best-selling vaccine books are by anti-vaxxers, though the company has removed some anti-vaccine documentaries from its Prime streaming service.

Lydia Smith at The Guardian reports that antivaxxers target cities, which are especially susceptible to the spread of measles and misinformation.

Living in a city means being in close proximity with millions of people every day, as you pass in apartment buildings, offices or on public transport. And while most of us have caught a cold at some point, we tend not to worry about catching something more serious like measles, especially if we were inoculated in childhood. After all, vaccines have helped to consign once-deadly outbreaks to history. Yet over the last decade diseases like measles, mumps and whooping cough, once disappearing, have made a resurgence.

...
 “Viruses spread easily in urban environments,” says Arthur Caplan, a professor of bioethics at New York University. “Plus cities are transportation hubs providing truck, car, train and plane routes for infected people to spread disease worldwide.
...
Cities are also constantly on the move, providing more opportunity for diseases to spread. “Cities often have more transient populations – with people coming and going and sometimes bringing infectious diseases with them which can spread among unvaccinated people,” says Heidi Larson, director of the Vaccine Confidence Project at the London School of Hygiene and Tropical Medicine. “Unvaccinated travellers can also contract infectious diseases from local populations and carry them to other places.”

...
Around half of all parents with small children have been exposed to misinformation about vaccines on social media, a recent report by the Royal Society for Public Health found. “Cities more typically have higher media saturation and more opportunities for the spread of misinformation,” Larson says.

High School Students on the Spectrum

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups. 

A release from Drexel University:

Youth with autism are growing up in a world where awareness of autism and expectations for full inclusion in society are increasing. Today, one in 59 children have an autism spectrum disorder (ASD) according to the Centers for Disease Control and Prevention. Because autism spectrum disorder is a lifelong neurodevelopmental disorder and no two youth with ASD are alike, their service and support needs vary and continually change as they age.

However, there are few current national statistics about the characteristics and needs of this growing and changing population. Such statistics are needed to ensure policies and programs are appropriately matched to the evolving needs of youth on the autism spectrum. This is where the National Autism Indicators Reports by Drexel University's A.J. Drexel Autism Institute come into play, a series that has been produced since 2015.

The recently released fourth edition, "The 2018 National Autism Indicators Report: High School Students on the Autism Spectrum," highlights the challenges facing minority youth and those from low-income households. Autism occurs in children from all backgrounds. But the impacts of autism are not felt equally across all groups. Youth from poorer households have fewer choices for services, fewer opportunities for work experiences and generally worse outcomes across a wide range of indicators. Minority youth often face obstacles accessing needed care and experience worse outcomes in many realms.

For the 2018 report, researchers looked at national data on youth ages 12-23 during their secondary school years.

Most notably, nearly half of teens on the autism spectrum live in households with incomes at or below 185 percent of the federal poverty level (about $45,000 for a household of four). One in four lived in a home that received at least one form of public assistance.

"We must understand that many families parenting teens on the autism spectrum are also struggling to make ends meet while trying to navigate complex systems of care and get the help their children need," said Paul Shattuck, PhD, program director of the Autism Institute's Life Outcomes Program and lead author of the report. "Moving the needle to improve young adult outcomes will require us all to acknowledge that we cannot disentangle helping youth from helping families - and that families have unique needs depending on their financial status. We cannot assume that programs developed to help relatively affluent families will work for financially disadvantaged families."

African American teens with ASD were more likely to have difficulty than their peers in several areas, including communication, self-care and adaptive behaviors and independently getting places outside of the home. Twenty to 26 percent of teens on the autism spectrum were non-white and 11-15 percent were Hispanic. By comparison, U.S. Census statistics indicate that 26 percent of all 18-year-olds were non-white in 2016 and 22 percent were Hispanic.

 Shattuck's team found that service receipt and functional abilities varied widely across individual and household demographics. However, more help is needed in the transition to young adulthood for all youth and young adults with ASD. Being prepared for a healthy transition can set the stage for years of positive development.

"Inadequate preparation during the last few years of high school can hinder success on many fronts: physical health and mental health, employment, continued education, friendships and integration into community life," said Shattuck "Students do not always receive transition planning, or sometimes it begins too late in high school to allow for adequate preparation. Community-based help is not always available after high school and this leaves many families struggling to navigate on their own and results in too many who are failing to launch successfully into adulthood."

The report includes information from the National Longitudinal Transition Study 2012 (NLTS-2012) - a national survey that provides a window into the lives of high school students on the autism spectrum, youth with other disabilities, and those without disabilities. It also includes the latest data on health and health care access among youth with autism from the National Survey of Children's Health (NSCH 2016).

"This report, like the others in the series, can inform the improvement of policies and community services that support the goal of an inclusive and just society where all persons have the ability to participate in meaningful life activities," said Jessica Rast, co-author of the report.

The College Admissions Scam Hurts Students with Disabilities

In The Politics of Autism, I discuss the growing number of college students on the spectrum.

From the Learning Disabilities Association of America:

Today the FBI announced an investigation, code-named Operation Varsity Blues, that uncovered a network of wealthy parents who paid thousands of dollars to a college-admissions private counselor to boost their children’s chances of gaining entrance into elite colleges. The U.S. Attorney for Massachusetts Andrew Lelling stating, “There can be no separate college admission for wealthy, and I will add there will not be a separate criminal justice system either.”

The investigation also revealed that the counselor facilitated the cheating by instructing parents “to seek extended time for their children on college entrance exams, which included having the children purport to have learning disabilities in order to obtain the required medical documentation.” (emphasis added)

These actions hurt all individuals with disabilities, including those with learning disabilities, by perpetuating the misperceptions that many students who obtain accommodations on college admissions do not have disabilities and that this abuse is widespread.

Every year thousands of individuals with learning disabilities apply for and are appropriately granted accommodations, including extended time, for the college admissions exams such as the SAT and ACT. The testing entities’ well-established and rigorous process to apply for and obtain accommodations for individuals with disabilities protects the rights of those with disabilities. The small number of students implicated in the FBI investigation demonstrates that it is very rare for a student without a disability to obtain testing accommodations.

Individuals with learning disabilities have average to above-average intelligence and have a neurobiological disorder that impairs their ability to learn yet are capable of average or above-average achievement. The courts have succinctly stated the reason that individuals with disabilities obtain accommodations is so the “exam results accurately reflect the test takers aptitude rather than the disabilities.” Enyart v. National Conference of Bar Examiners, 630 F. 3rd 1153 (9th Circ. 2011) Accommodations are about leveling the playing field and not about bestowing an unfair advantage.

Beth McGaw, President of LDA, is clear where LDA stands on fraud: “When individuals commit fraud and claim they have a learning disability in order to obtain testing accommodations this hurts every individual with a learning disability. LDA will continue to follow this story and work to assure that all individuals with a learning disability who are eligible are granted appropriate accommodations for college admissions tests.”

https://www.justice.gov/usao-ma/pr/arrests-made-nationwide-college-admissions-scam-alleged-exam-cheating-athletic

Amazon Pulls a Couple of "Autism Cure" Books

Autism parents are highly vulnerable to pitches for quack "cures."

In The Politics of Autism, I write:

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

 Brandy Zadrozny at NBC News:

Amazon is removing from its online marketplace “autism cure” books that unscientifically claim children can be cured of autism with pseudoscientific methods such as ingesting and bathing in a potentially toxic form of bleach and taking medication meant to treat arsenic and lead poisoning.

Amazon confirmed Tuesday that the books “Healing the Symptoms Known as Autism” and “Fight Autism and Win” are no longer available, but declined to answer specific questions about why it had removed them or whether they were part of a larger cleanup effort, citing a policy of not commenting on individual accounts.

The move by Amazon comes on the heels of a report in Wired published Monday that criticized the retail giant for offering medically dubious books and dangerous methods for reversing autism spectrum disorder. For years, news organizations have pointed out Amazon’s practice of hosting books that promote vaccine and other health-related misinformation, but the pressure has intensified in recent weeks.

Trump's Budget

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.

From the Arc:

Today, the Trump Administration released a budget request that if passed by Congress, would put the lives of people with disabilities at risk. The proposal includes deep cuts to Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. If enacted, states would receive less federal support to administer Medicaid, resulting in restricting eligibility, cuts to services, and growing waiting lists. Furthermore, it would not adjust to changes in health care, drug costs, aging of the population, or emergencies.

Not only would both a block grant or per capita cap harm people with disabilities, but the proposal also includes applying controversial and harmful work requirements across the country. Arkansas is the first state in the nation to take health care coverage away from people who don’t meet a work requirement. In the first seven months of implementation, more than 1 in 5 people subject to the policy lost their health care coverage. Applying this policy nationally, as the budget proposal would do, would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

Joel Achenbach et al. at WP:

President Trump’s third budget request, released Monday, again seeks cuts to a number of scientific and medical research enterprises, including a 13 percent cut to the National Science Foundation, a 12 percent cut at the National Institutes of Health and the termination of an Energy Department program that funds speculative technologies deemed too risky for private investors.

NIH would face a roughly $4.5 billion budget cut, according to an HHS document.