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Tuesday, February 28, 2017

Mandate Bill in Alabama

The Politics of Autism includes an extensive discussion of insurance.

Lauren Walsh reports at ABC33/40:
A renewed push to require health insurance companies cover treatments for autism is brewing at the Alabama State House.
Alabama is one of five states that does not require insurance coverage for autism treatments, like applied behavior analysis, known as ABA. Many families in state pay expensive, out of pocket bills for the treatment.
Representative Jim Patterson filed a bill to mandate the insurance providers include coverage. Similar bills have been introduced in the past, but have not had success in Alabama.
Senator Jabo Waggoner (R-Vestavia Hills) says the bill does not have a good chance of passing as it is written, pointing to the influence the insurance industry has in Montgomery
“It's one of those industries in Montgomery that have a lot of influence and it's hard to explain to a family with an autistic child to explain why it's not covered and why are you letting the insurance industry dominate on this issue,” said Waggoner.
Insurance providers in Alabama are required to offer autism therapies like ABA to its customers. The legislation requiring this, the “Riley Ward Act” was passed in 2012.
Senator Cam Ward (R- Alabaster) tells ABC 33/40 this has helped and several companies in Alabama have opted to provide the insurance plans with the enhanced coverage. However, he said “there’s still a big gap” between the families who have access to the coverage and those who need it.
The proposal, HB 284, has had its first reading in the House and has been assigned to the House Insurance Committee.
From the Autism Society of Alabama:
Thank you Jim Patterson, Madison for your leadership introducing House Bill 284 to cover autism therapies with no age cap. Please use this link to call, email or write your AL House of Representative Member. Your member may also be on Facebook, twitter or instagram.
Please ask your House of Representative Member for his/her support of HB 284. Please include the reason this is important to your family and our community. Please ask grandparents, extended family, church friends and neighbors to message their House of Representative Member on behalf of your family. In autism family life, sometimes, friends will ask, “How can I help your family?” Here is a great, easy way for friends and extended family to help your family living with autism.

Monday, February 27, 2017

Navigating Employment

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

The unemployment rate for individuals with autism spectrum disorder (ASD) is estimated to be 75-90%. Employment has become an emerging issue of national concern as a growing number of individuals diagnosed with ASD moves from adolescence into adulthood. Many will be looking for jobs in an inclusive, accepting workplace in which they can develop their existing strengths, learn new skills and begin to build a productive and satisfying career.
The Navigating Employment program works directly with the employer to fill a business need, recruiting and supporting employees at all ability levels, including highly talented, skilled individuals. We educate and consult with employers to set up both companies and the employee for success.
Many of the AAoM job candidates are currently underemployed or unable to find a job on their own. We focus on the barriers that hinder them from gaining employment and help individuals improve those skills to help with everything from resume building to interview preparation, while harnessing the skills to maintain employment and grow within a company.
Autism Alliance of Michigan and Ford were featured on NBC Nightly News for their new initiative Ford Inclusive Works. Take a look at one of our success stories from the pilot program. Ford plans to expand this program to include 24 more individuals on the spectrum in 2017.

Job Seekers: If you are interested in getting connected with AAoM’s employment team, potential candidates are asked to complete an online interest form on our website. From here, you will be contacted by an AAoM Navigator who will collect pertinent information.
Employers: Companies who are interested in following Ford’s lead in this initiative and hiring individuals with autism, please contact our employment team at 877-463-AAOM or

Sunday, February 26, 2017

ASAN v. Verma

A release from the Autistic Self-Advocacy Network:
The Autistic Self Advocacy Network calls on Congress to reject the nomination of Seema Verma, a longtime proponent of harmful health care policies, as Director of the Centers for Medicare and Medicaid Services. Verma’s previous career as a consultant for State Medicaid programs raises serious concerns about her ability to safeguard access to health care for autistic people and others with disabilities.
 The Director of the Centers for Medicare and Medicaid Services (CMS) plays an important role in overseeing state Medicaid programs. Many people with disabilities, including autistic people, rely on Medicaid for affordable, quality health care. Some people with disabilities qualify for Medicaid because they have proven that they have a disability that prevents them from working, but other people with disabilities are on the Medicaid “expansion” – a program that lets people qualify for Medicaid based on their income alone. This expansion is an important safeguard for people with disabilities who have trouble proving that they are unable to work or who need health care during the process of proving that they are unable to work – a process that can take several years.
In her past career as a consultant, Verma encouraged state Medicaid programs to seek “waivers” for the income-based “expansion” groups that would allow them to charge Medicaid recipients for their coverage. Normally, states are not allowed to take away health coverage from those who can’t pay, but the “waivers” that Verma helped design did exactly that. Medicaid beneficiaries, including people with disabilities, lost coverage for up to six months if they failed to make payments or who made payments late. People could lose coverage even if those late payments were due to a disability or due to administrative mistakes outside of their control. For example, one woman in Indiana lost her Medicaid coverage for six weeks because a private contractor lost track of a $1 payment.
This punitive approach to health coverage can be particularly harmful for Autistic individuals. Autistic people often experience executive functioning challenges that make it difficult to keep track of payment deadlines or respond to unexpected payment processing problems. The approach also leads to increased healthcare costs, as individuals kicked off of Medicaid rolls are forced to rely on expensive emergency-room care instead of regular doctor’s visits. As Director of CMS, Verma would be in a position to not only continue the harmful “waiver” programs that she helped create but also to expand them. For example, Verma would be in a position to approve proposals to take away Medicaid coverage for a full year from those who failed to pay. Previously, CMS has only approved penalties of up to six months.
Verma also admitted at her confirmation hearing that she has financial conflicts of interest that would prevent her from weighing in on critical issues such as Medicaid coverage for mental health and autism-related interventions. This means that these critical decisions may be made by other CMS officials who have not gone through the Senate confirmation process and whose policy positions are unknown.
Finally, we are concerned that Verma may use her position at CMS to promote other damaging policies that she has championed in the past, such as reducing the package of Essential Health Benefits that certain insurance plans – including Medicaid expansion plans – must provide. Low-income people, especially people with disabilities and people who have complex health conditions, need comprehensive coverage. Limited benefits plans are unlikely to offer the range of services that people with disabilities need to stay healthy and avoid serious long-term health consequences.
ASAN urges the Senate to reject this irresponsible approach to health coverage and to vote against Verma’s confirmation. For more information, please contact Samantha Crane, Director of Public Policy, at
A February 16 release from Senator Robert Menendez:
In an alarming exchange today during a hearing in the Senate Finance Committee, President Trump’s nominee to head the Centers for Medicaid and Medicare Services (CMS) refused to give U.S. Senator Bob Menendez straight answers on whether she supports equal access to health services for children on the autism spectrum, and if she planned to gut health care coverage for low-income Americans who gained insurance through the Affordable Care Act.
Health and Human Services (HHS) Secretary Tom Price and Congressional Republicans have advocated transforming the guarantee of health care through Medicare and Medicaid into merely a possibility through voucher and block grant gimmicks. Seema Verma did nothing during her testimony to allay Americans’ fears of losing their health care coverage.

Saturday, February 25, 2017

Concern About Medicaid

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

From the National Association of Councils on Development Disabilities:
As the three national Developmental Disabilities (DD) Network partners that represent the entities authorized in the DD Act whose members annually advocate for and provide hundreds of thousands of clinical services and home and community-based supports to people with disabilities and their families, the Association of University Centers on Disabilities (AUCD), the National Disability Rights Network (NDRN), and National Association of Councils on Developmental Disabilities (NACDD) are concerned about the policy brief distributed by the House Republican leadership on Thursday, February 16th to its Members about repealing and replacing the Affordable Care Act (ACA).
The goals of the policy brief distributed last week are to “put Medicaid on a budget” and to “return the focus of the program back to helping those most in need.”
While these two goals sound reasonable, they will likely result in constraints that will harm people with disabilities and those who support and serve them. We are concerned about three specific items in the policy brief: 1) proposed per capita caps with the option for block grants, 2) proposed Health Savings Accounts, and 3) “next generation high-risk pools.”
The proposed per capita allotment to be paid to states for each person eligible for Medicaid will threaten the long-standing guarantee to provide health care and support services to people with disabilities. Block grants would similarly cap the amount of money each state receives without allowing for adjustments when there are changes to health care costs, population growth, or in response to economic downturns, or natural disasters. In 2014, there were almost 600,000 people with disabilities waiting for home and community-based services from Medicaid. With the introduction of per capita allotments to states, it is only likely this number will increase. We have only to look at the cuts to Medicaid Texas made last year to see the reduction in services for those with disabilities.
The proposed health savings accounts also are of great concern. While designed to increase consumer control over health care costs, this is often not possible for people with disabilities. Living in rural or frontier America, or even in medium size cities, people with disabilities often have no choice about their health care and durable medical equipment providers. In addition, the amount of money allotted in a health savings account is often only a fraction of the cost of annual care for a person with a disability.
We are also concerned about the high-risk pools described in the policy brief as State Innovation Grants. Without adequate funding, high-risk pools will either deny coverage to some of those in need or the state pools will offer limited services. Either way, those with disabilities will suffer.
We urge the House Republican leadership to offer a plan that protects people with disabilities from the discrimination they experienced prior to the implementation of the Affordable Care Act and to ensure people with disabilities will have access to health care and support services. Health care coverage that does not include durable medical equipment; rehabilitative, habilitative, and mental health services; and preventative services will greatly harm the health and well-being of people with disabilities.
We look forward to working with the House leadership and all Members as Congress considers revisions to the ACA and Medicaid. For more information please contact: Kim Musheno (, Eric Buehlmann (, and Cindy Smith (

FDA Shuts Down a Quack "Cure"

In The Politics of Autism, I discuss autism quackery

A Tuesday release from the Food and Drug Administration:
On Friday [2/17], U.S. District Judge Robert G. James for the U.S. District Court for the Western District of Louisiana entered a consent decree of permanent injunction against Pick and Pay Inc./Cili Minerals, a manufacturer and distributor of drugs and dietary supplements, and its owner, Anton S. Botha, requiring the business to immediately cease operations until it comes into compliance with federal laws.
The complaint, filed by the U.S. Department of Justice, sought a permanent injunction against the company and its owners for unlawfully manufacturing and distributing unapproved new drugs, misbranded drugs, adulterated dietary supplements and misbranded dietary supplements.

The company and its owner marketed their products online at, and They also sold their products through a retail location in Lafayette, Louisiana.

The FDA works with companies to ensure their processes comply with the public health requirements in our laws and regulations,” said Melinda Plaisier, FDA associate commissioner for regulatory affairs. “But when a company refuses to comply, we will take enforcement action.”
The FDA inspected Pick and Pay Inc./Cili Minerals four times since 2012. During the inspections, the FDA found Pick and Pay Inc./Cili Minerals was manufacturing and distributing misbranded and unapproved new drugs as well as misbranded and adulterated dietary supplements. The defendants marketed their products with claims that they could treat medical conditions such as cancer, cardiovascular disease, multiple sclerosis, autism, bipolar disorder, brain injury and epilepsy. The FDA has not approved Pick and Pay Inc./Cili Minerals’ drugs for any use.

Lydia Ramsey and Skye Gould report at Business Insider:
At least one of President Trump's possible picks to head the Food and Drug Administration has a radical idea for when drugs should come to market.
Jim O'Neill, managing director at Mithril Capital, has said that he is in favor of approving drugs that are proven to be safe, even before they're shown to be actually effective.
Regardless of who Trump picks in the end, his interest in cutting regulation at the FDA is clear.
"We're going to be cutting regulations at a level that nobody's ever seen before," Trump said in a meeting with pharma executives on January 31. He estimated up to 80% of regulations will be slashed.

Friday, February 24, 2017

Keep an Eye on the Affordable Care Act

The Politics of Autism includes an extensive discussion of insurance issues, including the impact of the Affordable Care Act.

At NPR, Michelle Andrews reports:
Since the 10 required benefits are spelled out in the Affordable Care Act, the law would have to be changed to eliminate entire categories or to make them less generous than typical employer coverage. And since Republicans likely cannot garner 60 votes in the Senate to do that, they will be limited in changes that they can make to the ACA. Still, there's room to "skinny up" the requirements in some areas by changing the regulations that federal officials wrote to implement the law.

Habilitative services
The law requires that plans cover "rehabilitative and habilitative services and devices." Many employer plans don't include habilitative services, which help people with developmental disabilities such as cerebral palsy or autism maintain, learn or improve their functional skills, via speech or occupational therapy or other support services. Federal officials issued a regulation that defined habilitative services and directed plans to set separate limits for the number of covered visits for rehabilitative and habilitative services. Those rules could be changed.
"There is real room for weakening the requirements" for habilitative services, says Dania Palanker, an attorney and assistant research professor at Georgetown University's Center on Health Insurance Reforms, who has reviewed the essential health benefits coverage requirements.
Mental health and substance use disorder services
The health law requires all individual and small group plans to cover mental health services and treatments for substance use disorders. In the regulations, the Obama administration said that means those services have to be provided at "parity" with medical and surgical services, meaning plans can't be more restrictive with one type of coverage than the other regarding cost sharing, treatment and care management.
"They could back off of parity," Palanker says.

Thursday, February 23, 2017

The Fry Case

The Politics of Autism,  I discuss court cases under the Individuals with Disabilities Education Act and other statutes.

Amy Howe writes at SCOTUSblog:
When Stacy and Brent Fry obtained a goldendoodle for their five-year-old daughter, E.F., in 2009, they could not possibly have imagined that they would find themselves, seven years later, at the U.S. Supreme Court. But that is exactly where they were at the end of October, listening to the justices debate their case. The case began as a dispute over whether E.F., who has cerebral palsy, could bring the dog, named Wonder, to kindergarten with her, but it eventually became a clash over a fairly technical question about the interaction among a group of laws intended to assist people with disabilities.
Today the court issued a unanimous decision in the Frys’ favor. It ruled that, when families like the Frys file lawsuits under the Americans with Disabilities Act or the Rehabilitation Act, which bar discrimination against both adults and children with disabilities, they do not need to first go through the administrative proceedings required by the Individuals with Disabilities Education Act, which ensures that children with disabilities receive the special education services that they need, unless the focus of the lawsuit is an allegation that the student did not receive the “free appropriate public education” guaranteed by the IDEA. Put another way, this means that a student who alleges that a school has discriminated against her because of her disability is not required to use the IDEA’s administrative proceedings simply because the alleged discrimination happened at school.

Wednesday, February 22, 2017

Legislation to Raise the Georgia Insurance Cap

The Politics of Autism includes an extensive discussion of insurance.

In Savannah, Cristina Tuso reports at WTOC-TV:
Georgia lawmakers are considering a bill that would expand insurance coverage for people by raising the required coverage age to 21.
Here’s the challenge families affected by Autism face, it is recommended that a person with Autism get 30 hours of therapy a week, and that will end up costing at least $30,000 a year to get a child the attention they need. This new piece of legislation would help cover those costs.
Experts at the Matthew Reardon Center in Savannah say the earlier a person can start therapy and the longer they can afford to do it, the better off and more independent they will be as adults.
Applied Behavioral Analysis therapy, ABA, asses a child, coming up with an individual education plan and then helping a child self-manage autistic behaviors.

"We get calls from parents of three-year old's who don't have the financials means to pay for therapy," said Patti Victor, Matthew Reardon Center President.
The current law only requires that insurance providers cover autism treatment services until the age of six. That coverage cap is the lowest in the country, which means that families that send their children to the Matthew Reardon Center in Savannah for specialized therapy, can't afford the help that their child needs.

WTOC-TV: Savannah, Beaufort, SC, News, Weather & Sports

Tuesday, February 21, 2017

Texas, Autism, Vaccines

Lena Sun reports at The Washington Post:
The group of 40 people gathered at a popular burger and fish taco restaurant in San Antonio listened eagerly to the latest news about the anti-vaccine fight taking place in the Texas legislature.
Some mothers in the group had stopped immunizing their young children because of doubts about vaccine safety. Heads nodded as the woman giving the statehouse update warned that vaccine advocates wanted to “chip away” at parents’ right to choose. But she also had encouraging news.
“We have 30 champions in that statehouse,” boasted Jackie Schlegel, executive director of Texans for Vaccine Choice. “Last session, we had two.”
Now they also have one in the White House.
President Trump’s embrace of discredited theories linking vaccines to autism has energized the anti-vaccine movement. Once fringe, the movement is becoming more popular, raising doubts about basic childhood health care among politically and geographically diverse groups.
Public health experts warn that this growing movement is threatening one of the most successful medical innovations of modern times. Globally, vaccines prevent the deaths of about 2.5 million children every year, but deadly diseases such as measles and whooping cough still circulate in populations where enough people are unvaccinated.

Monday, February 20, 2017

Trump's Nonsense debunks Trump's claims that there has been a tremendous increase in autism, pointing out that most of the apparent increase results from awareness and changing criteria.
But is there any room left for an actual increase in the prevalence of ASD?
Potentially. For example, researchers have also found associations between both the mother’s and father’s age and risk for ASD — that is, the older the parents, the greater the chance of having a child with ASD. And women in the U.S. are having children later today compared to 2000, according to the CDC. However, we couldn’t find similar data on U.S. men. We also couldn’t find a study that quantified how much increasing parental ages could be contributing to increased prevalence of ASD in the U.S.
If Trump had said that there has been a “tremendous” increase in the number of reported cases of ASD, that would be true.
But it’s unclear, at best, that there’s been a “tremendous” increase in the actual number of children who exhibit ASD’s symptoms.

Research suggests that broadened diagnostic criteria, greater awareness and diagnostic recategorization of ASD with similar disorders may account for a portion, if not the majority, of this reported increase.

Currently, the CDC says the “increase in ASD diagnosis is likely due to a combination” of the these factors and an actual increase.
What is clear, however, is that there is no evidence to support any contribution by vaccines to the increase in reported prevalence of ASD, as Trump implied back in 2015.
An editorial in the Irish Times describes the benefits of vaccines.
But vaccines are under threat from a political source: US president Donald Trump is raising doubts about the safety and value of vaccines. Last week, immunologist Prof Kingston Mills of Trinity College Dublin spoke of the “Trump effect”, as the newly installed president spreads fear about vaccine safety over social media.
“President Trump has been tweeting about vaccines, making claims about links with autism,” Prof Mills said. “He has been adding further fuel to the fire that vaccines have side-effects that have not been proven.” Among the 20 vaccines that prevent life-threatening diseases are immunisations against deadly strains of meningitis, the congenital damage caused by rubella in expectant mothers, and the cancer-causing human papillomavirus (HPV).
HPV vaccine has the potential to reduce deaths from cervical cancer; however the uptake of the vaccine in the Republic has dropped to 50 per cent due to a campaign claiming it caused chronic fatigue syndrome. And while the putative link has not been proven, the negative publicity persists.
It is no coincidence Trump’s election campaign featured the disgraced doctor Andrew Wakefield, who was struck off the medical register in Britain after fraudulently claiming the MMR vaccine caused autism. The actor Robert de Niro and prominent campaigner Robert J Kennedy have called for a vaccine commission to be established. “Anti -vaxxers” are close to power in the US and could do untold damage to global health.

Focus Groups Look at Programs for Autistic Adults

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
Kaitlin H Koffer Miller, Mary Mathew, Stacy L Nonnemacher and Lindsay L Shea have an article at Autism titled Program Experiences of Adults with Autism, their Families, and Providers: Findings from a Focus Group Study."  The abstract:
A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.
From the article:
This study has important implications for delivery of services to adults with ASD broadly. Staff, families, and adults with ASD identified training as a top priority. Areas of training needs identified are largely reflective of evolving research on adults with ASD. Supporting individuals across the spectrum of needs was a recurrent theme in the focus groups and reflects the existing literature base on the vastly different service needs between individuals with ASD, especially among those with and without ID (McCarthy et al., 2010; O’Brien and Pearson, 2004).
A powerful question that came up in focus groups with families and with participants was: what will happen to an adult with ASD after their parent, caregiver, guardian, or other essential family member passes away? According to the 2011 PA Autism Needs Assessment, 56% of parents and caregivers had no long-term plans for their child (of all ages) after they are no longer able to care for them. This statistic is startling given that of the adults with ASD sampled, about 77% live at home with their family or caregiver (Bureau of Autism Services, Pennsylvania Department of Human Services, 2011b). Another report replicated these results, finding that about 80% of adults with ASD have been reported to be living with their parent/caregiver and have no long-term plans or options for independent living or community integration (Reagor, 2010). Engaging in the long-term planning process is invaluable to avoid crises when adverse life events occur, such as the death of a caregiver.

Sunday, February 19, 2017

Autism as an Asset in the Workplace

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

At Fast Company, Lisa Rabasca Roepe writes:
In addition to Ernst & Young, other large companies are developing programs to recruit and retain employees with autism. For instance, SAP has a goal of hiring 650 employees with autism by 2020. So far, the company has hired 116 individuals with autism who range in age from 22 to 59, are located in 17 locations in nine different countries, and spread across 100 teams, says Jose Velasco, head of SAP’s Autism at Work program in the U.S. To help them succeed, SAP provides six weeks of pre-employment training, and once they are hired, they are supported by their manager, who has been given autism awareness training; an office mentor, who has volunteered to help and is from another work team; and a job and life skills coach, Velasco says. SAP and Ernst & Young are informally working with Microsoft and Hewlett-Packard to share best practices for hiring and retaining more employees with autism.
SAP and Ernst & Young have found that hiring employees with autism bring benefits. They provide a different perspective to problem solving and the creative process, Velasco says. Working with an employee diagnosed with autism can help you become a more effective communicator and manager, says Jamell Mitchell, an associate director at Ernst & Young who manages Briefer and several other employees with autism. "I have found myself pausing and saying, ‘I’m not as clear as I can be,'" he says, "and then taking the time to recraft a communication so it’s clear and I am hitting the key points."

Saturday, February 18, 2017

Trump, Autism, and Public Health

Daniel Smith writes at The New York Review of Books:
Trump has frequently promoted his views on Twitter, in a number of his characteristic modes: brash certainty (“Massive combined inoculations to small children is the cause for big increase in autism…”), cartoonish storytelling (“Healthy young child goes to doctor, gets pumped with massive shot of many vaccines, doesn’t feel good and changes—AUTISM. Many such cases!”), shameless slander (“I am being proven right about massive vaccinations—the doctors lied”).
As of now, most Americans do not share Wakefield’s, Kennedy’s, or Trump’s paranoid views. A survey published this month by the Pew Research Center found that some 82 percent of Americans support requiring all students in public schools to receive the combined vaccine for measles, mumps, and rubella. In the realm of infectious disease, however, “most” isn’t adequate for full immunity, and there remain pockets of resistance. Rates of vaccination in affluent areas such as Orange County, where the Disneyland outbreak began, are significantly lower than average. The Pew study found that African Americans are particularly skeptical about the safety of vaccines. So, too, are younger parents. More than 40 percent of parents of children under the age of four believe that the risk of side effects from routine vaccinations are medium or high.
The danger we face—the grave danger—is that Trump’s support for the anti-vaccination position will expand these pockets of resistance. Children will get sick and die, needlessly and avoidably. The evidence is clear: vaccines are safe. They are also necessary. The facts are the facts, nonpartisan and empirical, and scientists will continue to espouse them. But Trump is Trump, heedless and stubborn in his ignorance. The health of our children is in his tweeting hands

Friday, February 17, 2017

Reactions to the RFK Press Conference

In The Politics of Autism, I discuss the discredited idea that vaccines cause autism.  Trump has supported that notion. 

Sophia Tesfaye writes at Salon:
President Trump is “not going to back down” from his pledge to study the effects of vaccinations, Kennedy told reporters at his vaccine safety press conference on Wednesday. (A full livestream of Kennedy’s press conference was hosted by right-wing conspiracy theorist Alex Jones’ Infowars.)
Kennedy told Politico that he has met “many times” with members of Trump’s transition team since December. Shortly after meeting with Trump in January, the well-known anti-vaxxer claimed that he had been invited to head a “vaccine safety and scientific integrity” commission.
On Wednesday Kennedy told reporters that he has been “trading documents about what the commission would look like” with administration staff and had spoken with presidential aides three times since his January meeting with Trump. Kennedy said in January when he met with Trump about the issue at Trump Tower, White House aides Steven Bannon, Stephen Miller and Vice President Mike Pence had all participated.
The explanation for the bogus vaccine-autism link is a constantly shifting target. As noted, both the MMR vaccine and thimerosal have been blamed, and the anti-vaccine movement happily gloms onto both explanations despite the fact that they are completely unrelated. That the various theories never really cohere doesn’t seem to give the movement pause. Blurring dark but vague threats, anti-vaccine activists blend them into a miasma through which no given study can hope to penetrate. Uncertainty is good for stoking fear.
When studies show that the MMR vaccine doesn’t cause autism, and when the original study suggesting a link is exposed as a fraud? It must be thimerosal! Other studies show no association between thimerosal and autism, and thimerosal isn’t even used anymore? The combination of all the vaccines at once is the problem! Produce evidence to support the safety of the current vaccination schedule, and the boogeyman simply adopts another form.
Because much of the evidence in support of vaccines comes from the Centers for Disease Control and Prevention, detractors seize on corruption as an explanation for studies with findings contrary to their beliefs. The anti-vaccine movement affords the CDC roughly as much respect as you’d typically give cardsharps and second-rate grifters, and anything the CDC produces is dismissed out of hand. But even if the CDC were a hotbed of malign pharmaceutical industry influence, that doesn’t explain why large studies demonstrating the safety of vaccines come from places like Denmark or the United Kingdom, where the CDC doesn’t have a lot of pull.

Thursday, February 16, 2017

Trump, RFK, DeNiro, Autism, and Vaccines

In The Politics of Autism, I discuss the discredited idea that vaccines cause autism.  Trump has supported that notion. 

At Buzzfeed, Azeen Ghorayshi reports on Robert F. Kennedy, Jr.:
On Wednesday, Kennedy said that he’s been contacted by the Trump administration three times since their original meeting in January. “They tell me that they’re still going forward with a commission,” Kennedy said, adding that he “can’t tell” whether it will happen. BuzzFeed News has asked the administration for comment on these claims.
But in a panel discussion at the National Press Club in Washington D.C. on Wednesday that included the actor Robert De Niro, Kennedy argued that the Centers of Disease Control and Prevention, in cahoots with journalists, have been denying the dangers of vaccines, fueled largely by money pumped in by a powerful pharmaceutical industry. He called the public health agency a “cesspool of corruption” and “a vaccine company,” that hid science from the public. To that end, Kennedy announced the “World Mercury Project Challenge,” offering $100,000 to anyone who could find a scientific study that demonstrated the safety of thimerosal-containing vaccines in children and pregnant women.
As the article points out, a real expert has a different view:
“I’m a vaccine scientist. I’m also the father of an adult daughter with autism,” Peter Hotez, president of the Sabin Vaccine Institute, told BuzzFeed News.
“Not only is there an abundance of evidence showing that vaccines are safe, there’s not even any plausibility of an association [with autism].”
“Press conferences like this become a distraction from the really important and hard work that needs to be done,” Hotez said.
Meredith Wadman reports at Science:
Kennedy was summoned on 10 January to meet with the then–president elect and emerged from Trump Tower in New York City to tell the press that Trump had asked him to head a “vaccine safety and scientific integrity" commission. Within hours a Trump spokesperson qualified Kennedy’s statements, saying the president “is exploring the possibility of forming a commission on Autism … however no decisions have been made.” The spokesperson added that Trump was discussing “all aspects of autism with many groups and individuals.”

Julia Belluz reports at Vox: 
Kennedy has a long history of stoking vaccine doubts, focusing in particular on the claim that the mercury in shots makes kids sick. ...
Kennedy’s article at Salon was retracted, after the online magazine had to run a series of corrections that contradicted many of the piece’s claims.

What’s more, thimerosal, an ethyl mercury-containing antimicrobial, has been removed from most vaccines for children since 2001, with the exception of an inactivated flu vaccine. The public health community did this as a precautionary measure — part of a strategy to reduce mercury exposures from any source. And since then, researchers have found that autism rates among children haven’t gone down. So it’s not clear why Kennedy continues on this mercury and vaccines tirade. What’s more, thimerosal was never used in the measles-mumps-rubella vaccine that some vaccine skeptics claim causes autism.
Julia Brucculieri reports at The Huffington Post:
De Niro seemed to be fully on board with his fellow panelist.

I’m glad I’m here. I thought what Bobby said was great. It was eloquent. I couldn’t have said it better myself. I agree with him 100 percent. Thank you,” he said.

The actor has been sympathetic to the anti-vaccine movement in the past. Last year, he gave the go-ahead to screen the controversial documentary “Vaxxed” at the Tribeca Film Festival (which he co-founded). The film was directed by discredited physician Andrew Wakefield, and was eventually pulled from the festival lineup after immense backlash from the scientific community. Wakefield published his first study linking vaccines to autism in 1998, but was unable to prove his theory. The study was retracted in 2010 and Wakefield was stripped of his medical license in the U.K. later that year.

Trump's "Horrible" Comments

While the principal correctly answered Trump’s question, saying approximately 1 in 68 people are diagnosed with autism, it’s important to note a higher rate of autism doesn’t necessarily mean more children are on the spectrum. It means more children are being diagnosed – something the medical community is able to do better now than it could decades ago when autism rates were reportedly lower. Trump saying an increase is “a horrible thing to watch,” also demeans the autism community, implying that having more people on the autism spectrum is a horrible thing.
At The Washington Post, Michelle Ye Hee Lee gives Trump a Three-Pinocchio lie rating:
About one in 68 children in the country has been identified with an Autism Spectrum Disorder (ASD), according to a 2016 report by the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network.
The rate in the 2016 report was the same as it was in 2014 — and the definition for autism was broadened in 2013.
The CDC said it is not yet clear if the 2016 mean autism rates are stabilizing. CDC data show the rate of autism increased since 2000, when about one in 150 children were identified with autism spectrum disorder.
But it’s problematic to compare autism rates over the last three decades, because the criteria for diagnosing autism have changed with revisions of the Diagnostic and Statistical Manual (DSM). In 1983, the criteria for “autistic disorder” were more restrictive. More disorders were added since then, broadening the range of disorders that now meet the definition of the Autism Spectrum Disorder, according to the Autism Science Foundation, a nonprofit that supports autism research and raising awareness of the disorder.
“Due to inconsistencies in diagnosis and how much we are still learning about autism, the most recent DSM (DSM 5) only has one diagnosis, autism spectrum disorder (ASD), which encompasses each of the previous four disorders,” according to the foundation. DSM 5 was released in 2013.
Laurel Raymond writes at ThinkProgress:
Trump’s claim of a “tremendous increase” in autism rates isn’t backed up by the data — but it is a favorite talking point of the anti-vaccine movement, which the president just broadcast on the highest stage.
The point is compelling on a surface level, because it’s based on a rise in diagnoses of autism since the 1990s. Experts, however, point out that a raise in diagnoses does not necessarily correlate with a raise in actual rates.
Anti-vaxxers, however, often push the uncorroborated claim that there has been such an increase — and point to vaccines as the culprit. That bogus link originated in the 1990s in a now-thoroughly discredited scientific report. The article was officially retracted after it became clear that the conclusion was based on shoddy research and manipulated data. Still, the debunked link between vaccines and autism has persisted ever since.

Wednesday, February 15, 2017

More on Trump's Comments

In The Politics of Autism, I explain why the special-ed numbers increased:
In any policy area, the act of gathering data brings out cases. Counting may legitimize discussion of uncomfortable topics. It enables people with a condition to come forward as a group instead of solitary individuals. Official record-keeping opens a channel for reporting: once an organization announces that it is keeping count, people send it information. Such reactive effects are especially strong when benefits attach to membership in a category.
With a greater public awareness of general disability issues, and with the new language of IDEA, parents of autistic children began pressing local school districts to get their children into the system. Psychiatrist Allen Frances writes of a “positive feedback loop” between advocacy and the provision of services. As changes in diagnosis increased the population of identified autistic people and their families, they were better able to push for services, thereby increasing the number of people receiving such services.
Andrew Freedman writes at Mashable:
Trump is right that autism rates have increased over the long-term, but this increase may be misleading on its surface, doctors warn.

Research has shown an increase in the diagnosis of autism spectrum disorder and a nearly three-fold increase in autism diagnoses in special education programs in the U.S. This may be why Quenneville reported the increase that she did.

However, the increase in autism cases may partly be explained by the reclassification of individuals that would previously have been diagnosed with other intellectual disabilities, according to a study published in the American Journal of Medical Genetics in 2015.

"For quite some time, researchers have been struggling to sort disorders into categories based on observable clinical features, but it gets complicated with autism because every individual can show a different combination of features" said Santhosh Girirajan, an assistant professor of biochemistry and molecular biology and of anthropology at Penn State who was the lead author of that study, in a press release.
Rafi Letzter writes at Business Insider:
The notion that autism is on the rise is a talking point of the anti-vaccine movement — a group that believes parents shouldn't vaccinate their kids based on research from a fraudulent 1998 study.
Trump has referenced anti-vaxxer claims before. Here's a tweet from 2014:

More recently, Trump met with Robert Kennedy Jr., an anti-vaccine activist who has published books about the alleged dangers of the treatment. He claims (without scientific evidence) that a cabal of scientists are poisoning children for profit by giving them vaccines. After his meeting with Donald Trump, Kennedy reportedly thought he'd be selected to chair a presidential panel on" vaccine safety and scientific integrity."
Andrew Wakefield, the author of the fraudulent 1998 study, also attended Trump's inaugural ball.
The recent opposition to vaccines has caused concern among scientists and medical professionals, since there's evidence that the movement has led to a measurable spike in measles outbreaks in the US. Measles can be fatal to children, as can pertussis and other ailments that vaccines prevent.
The estimated number of lives saved by childhood vaccinations measures in the hundreds of thousands.

At The Wall Street Journal, Damien Paletta points out that he pointed a finger at President Obama:
 In 2012, he tweeted:
He has also said he blames the administration of vaccines for the increase in autism.