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Thursday, January 19, 2017

Opinion on Autism and Vaccines

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.  Trump has supported that theory.  As an earlier post indicated, his voters were more likely than Clinton voters to believe the myth. Another post looked at partisan data.  There are also signs of ideological distrust of science.

President-elect Donald Trump’s skepticism about the safety of childhood vaccines contrasts not only with the scientific consensus, but also with the opinions of Americans ― fewer than one-quarter of whom think immunization should be a matter of personal choice.

By a more than 2-1 margin, 54 percent to 26 percent, Americans say that the science supporting the safety of childhood vaccination is “indisputable,” rather than something that requires future debate, a new HuffPost/YouGov survey finds, although partisan divides on the issue are widening.
But although a majority of Democrats and Republicans still support vaccination, the minor partisan divides present in the 2015 survey appear to have modestly widened.

Democrats have become even more staunch advocates for vaccines in the past two years. Two-thirds say that vaccine science is indisputable, up 6 points from 2015. Seventy-seven percent still consider childhood vaccines a matter of public health.

In contrast, while 64 percent of Republicans think vaccination is a public health issue, that’s down 7 points since the previous survey. Fifty-three percent consider childhood vaccines indisputably safe, down 9 points from 2015.

Equity for All

Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- has provoked widespread reactions.

At US News, Jessica Berthold criticizes the vaccine-autism myth and says that our focus should go elsewhere:
Better yet, let's take a preventive approach that not only acknowledges the many people already living with autism in this country, but provides resources that enable people with autism to thrive in their families and communities. The need is great, for all with autism but particularly those in lower-income communities: for better diagnosis and screening, for early intervention and ongoing treatment, for better insurance/Medicaid coverage, for school supports, for respite care for caregivers, for housing and employment options once autistic people age out of the school system, and for embracing autistic people as full members of our society. I know firsthand that fighting for your child to get adequate treatment and appropriate education is a full-time job. I know – from speaking with many parents in my community – that it becomes much harder once your autistic child is out of secondary school and in the real world, where the employment rate for autistic people is abysmal and the quirks seen as "cute" in a young child are viewed in an adult as off-putting or even dangerous. And I know that I'm a privileged, well-educated woman with a decent salary – how much more overwhelming this fight for your child must be when you face additional discrimination or lack the resources to fully mobilize the limited systems and supports that currently exist? Instead of throwing money and time at a conspiracy theory that's long been stripped of credibility, let's devote our resources to equity for all with autism.

Wednesday, January 18, 2017

DeVos on IDEA

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act:

During her confirmation hearing for Secretary of Education, Betsy DeVos faced questions from Senator Tim Kaine (D-VA):
Kaine: Should all K-12 school receiving governmental funding be required to meet the requirements of the Individuals with Disabilities Education Act?
DeVos: I think they already are.
Kaine: I’m asking you a “should” question. Whether they are or not, we’ll get into that later. Should all schools that receive taxpayer funding be required to meet the requirements of the Individuals with Disabilities Education Act?
DeVos: I think that’s a matter that’s best left to the states.
Kaine: So some states might be good to kids with disabilities and other states might not be so good, and then what? People can just move around the country if they don’t like how their kids are being treated?
DeVos: I think that’s an issue best left to the states.
Kaine: What about the federal requirement. It’s a federal law, the Individuals with Disabilities Education Act. Let’s limit it to federal funding. If schools receive federal funding should they be required to follow a federal law whether they are public, public charter or private?
DeVos: As the Senator referred to –
Kaine: Just yes or no, I’ve only got one more question
DeVos: There’s a Florida program. There are many parents that are very happy with the program there.
Kaine: Let me state this: I think all schools that receive federal funding, public, public charter or private should be required to meet the conditions of the Individuals with Disabilities Education Act. Do you agree with me or not?
DeVos: I think that is certainly worth discussion and I would look forward to.
Kaine: So you cannot agree with me.
Politico follows up:
The exchange prompted gasps from some watching the confirmation. Sen. Maggie Hassan then followed up, noting that IDEA is federal law and “federal law must be followed where federal dollars are in play.”
“Were you unaware that it is federal law?” Hassan asked.

“I may have confused it,” DeVos said.

“I'm concerned that you seem so unfamiliar with it,” Hassan said, adding that some private school voucher programs supported by DeVos aren’t honoring students’ rights under IDEA.

DeVos said that if confirmed, she’ll be sensitive to the needs of students under the law.

“It is not about sensitivity,” Hassan said. “It is ensuring that every child has equal access to a high-quality education. The reality is the vouchers that you support do not always come out that way. That is why it is something we need to continue to explore.”

Tuesday, January 17, 2017

Further Pushback Against Trump & RFK Jr. on the Autism-Vaccine Myth

Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- has provoked widespread reactions.

So basically, antivaccine activists, led by Polly Tommey, who also co-produced VAXXED, are collecting stories of “vaccine injury.” One could say that the movie VAXXED consists, to a large degree, of stories of “vaccine-induced” autism, and the VAXXED team has been busy collecting such stories and posting videos to its website, grouped by state. For instance, here is Michigan, which as of last night included six videos. Not surprisingly, California has many more. So far, the VAXXED team claims it’s received over 650 e-mails from people who have submitted their stories.
This could be a very effective technique with this particular President for the simple reason that he does not understand science, shows little interest in science, and clearly values anecdotes over data. He is very easily influenced by flattery. He has a long and sordid history of antivaccine views. He’s been very consistent in this, dating back to at least 2007. He became antivaccine because of stories told to him by parents just like this, according to RFK Jr.
At STAT, Sheila Kaplan proposes question for HHS nominee Tom Price.
Do you share the president-elect’s concerns about the safety of US vaccines?
Trump has made a number of remarks indicating that he is concerned about vaccine safety, seemingly lending credence to debunked theories suggesting vaccines can cause autism. He also met recently with Robert F. Kennedy Jr., an outspoken anti-vaccine figure, who later said he had been asked to lead a committee on vaccine safety. (Trump’s transition team did not confirm he had been asked to do so.)
As the head of the nation’s top health agency, Price would be in a position to, at the very least, set the administration’s tone on vaccines.
At The Sacramento Bee, Karin Klein writes that RFK's California campaign against vaccination mandates focused on thimerosal, which has been out of vaccines for more than a decade.
Kennedy says that his mission would be to look at the science, but how could he be trusted to do that when he thinks any science that doesn’t fit with his preconceived notions is a plot? This is how he voiced his fringe vaccine belief: “They get the shot, that night they have a fever of 103, they go to sleep, and three months later their brain is gone. This is a holocaust, what this is doing to our country.”

He later apologized for that insulting and wildly inaccurate description of autism, but it proves the point: This man is not a scientist or anything remotely resembling a medical expert. He doesn’t belong anywhere near a scientific inquiry.

Want an example of a holocaust? In 1990, measles killed 872,000 people worldwide. A global vaccination effort reduced that to 158,000 people by the year 2011. A recent study found that the measles vaccination campaign had saved the lives of 20 million children from 2000 to 2015 – and even so, missed measles inoculations mean that 400 children a day continue to die from the disease.

The danger isn’t vaccines. Measles and many other diseases are highly contagious, potentially fatal, but preventable. The danger is from people who throw around scare words, paving the way for its comeback.

Monday, January 16, 2017

Training Parents to be Advocates for 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.
At The Journal of Autism and Developmental Disorders, Julie Lounds Taylor and colleagues have an article titled "Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial." The abstract:
This study presents findings from a pilot randomized controlled trial, testing a 12-week intervention to train parents of youth with autism spectrum disorder (ASD) to advocate for adult disability services—the Volunteer Advocacy Program-Transition (VAP-T). Participants included 41 parents of youth with ASD within 2 years of high school exit, randomly assigned to a treatment (N = 20) or wait-list control (N = 21) group. Outcomes, collected before and after the intervention, included parental knowledge about adult services, advocacy skills-comfort, and empowerment. The VAP-T had acceptable feasibility, treatment fidelity, and acceptability. After participating in the VAP-T, intervention parents (compared to controls) knew more about the adult service system, were more skilled/comfortable advocating, and felt more empowered.
From the article:
In terms of knowledge, no relation existed between the proportion of sessions accessed in-person and the amount of knowledge parents gained about the adult service system.
But when considering parents’ skills-comfort and empowerment, it may matter enormously whether one personally attends a group or simply watches on-line by oneself. In this case, the more sessions that a participant attended with the group, the higher their advocacy skill scomfort and the higher their sense of empowerment.
In considering this intriguing finding, several issues emerge. First, although our focus centered on parental advocacy, knowledge seems a necessary-but-not-sufficient condition for a thoughtful, informed advocate. Simply stated, one cannot advocate successfully if one does not know enough about the adult disability system, its many
types of services, agencies, rules, and criteria. 
But at the same time, knowledge alone may not be enough, and the VAP-T’s knowledge and social-emotional components may both be important. Such a conclusion also seems borne out from several types of parent interventions. In the non-disability field, Sanders’ (2008) widely-used “Triple P-Positive Parenting Program”, while aimed at preventing children’s severe emotional problems, explicitly fosters parents’ knowledge, skills, and confidence. So too is there analogous evidence concerning parents of children with disabilities. Although these parents have been the focus of relatively few intervention studies (Dykens 2015), those parental interventions that incorporated multiple components—that went beyond solely teaching parents behavioral techniques or solely providing emotional support—have been shown to be most effective (Singer et al. 2007). In this case too, parents appeared to value both knowledge about adult services and the social support of the group, of the workshop facilitator, and of other parents.
  • Dykens, E. M. (2015). Family adjustment and interventions in neurodevelopmental disorders. Current Opinion in Psychiatry, 28, 121–126.PubMedGoogle Scholar
  • Sanders, M. R. (2008). Triple P-Positive Parenting Program as a public health approach to strengthening parenting. Journal of Family Psychology, 22, 506–517.CrossRefPubMedGoogle Scholar
  • Singer, G.H.S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research Reviews, 13, 357–369.CrossRefPubMedGoogle Scholar

Sunday, January 15, 2017

Autism, Vaccines, and Trump: The Hits Keep Coming

Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  (He also has a bad record on disability issues more generally.) The story that Trump might appoint anti-vaccine activist Robert F. Kennedy Jr. to head a presidential commission -- whether on vaccines or autism -- has provoked widespread reactions.

Given Trump’s interest in Russia, he might be interested to know that the first claims of an association among vaccines, mercury, and child neurological health problems were raised in the early 1980s by Soviet virologist Galena Petrovna Chervonskaya and trumpeted in the Communist Party’s Komsomolskaya Pravda. Vaccination rates fell so low following the report that Soviet soldiers returning from war in Afghanistan, where diphtheria was still common, unwittingly spawned an epidemic that swept the Soviet Union, causing the worst outbreak since World War II. Some 200,000 unvaccinated children contracted diphtheria, which killed roughly 2 to 3 percent of those infected, varying by region.
Steven Salzberg writes at Forbes:
So back to this "vaccine commission" that RFK Jr. wants to lead. Besides the blindingly obvious fact that RFK Jr. is completely, utterly incompetent to lead such a commission, he and Trump also seem unaware that the U.S. already has a vaccine commission. It's called the Advisory Committee on Immunization Practices, and it's filled with medical experts who have spent their lives studying vaccines and vaccine safety. It also includes a consumer representative, and it is completely open, despite the conspiracy-mongering protestations of RFK Jr. If you want to see who's on it, just look here. The ACIP meets three times a year, its meeting schedule is also posted on the website, and the meetings are open to the public.
Putting Robert F. Kennedy Jr. in charge of a commission on vaccines is akin to putting Josef Stalin in charge of prison reform. By insisting that vaccines cause autism, both Trump and RFK Jr. have already ignored a vast body of science that shows vaccines to be not only safe, but perhaps the single greatest benefit to public health in the history of medicine. If Trump gives RFK Jr. a platform to spout his anti-vaccine nonsense, the two of them will set back healthcare by decades. Infectious diseases such as measles will return with a vengeance, and children will die. That will be an awful outcome, and no one–not even Trump or RFK Jr.–can possibly want that. Let's hope that someone in Trump's inner circle stops him before this goes any further.
An editorial in The St. Louis Post-Dispatch:
The pattern is clear. President-elect Donald Trump wants disrupters in control of agencies and commissions that he doesn’t value. That’s the new president’s prerogative, but he risks inflicting serious harm with wholesale changes to agencies whose missions are based on solid, well-identified public needs.
Imagine the death and suffering that would rain down across America without vaccines to fight polio, smallpox or the measles. Parents require assurance that their children will not be exposed to dangerous diseases at school because others have been misled by myths perpetuated by the incoming administration about unfounded dangers of vaccines.

Trump fanned fears about vaccines during his campaign and perpetuated a widely discredited myth that they cause autism. Kennedy has been writing and speaking for more than a decade about supposed links between vaccines and autism. He has also toured the nation testifying against state vaccine mandates.
The theory has been widely discredited by reputable scientific studies. Health professionals have been alarmed by the growth of the anti-vaccination movement, saying public health will suffer if the effort is not halted.
An editorial in The Boston Globe:
Perhaps Trump’s stance on vaccines shouldn’t come as a surprise. During the 2016 campaign, he called global warming a hoax. But the stakes are exponentially higher as he assumes the presidency. In addition to the real risk of harming public health, he’s making it more likely that medical science will follow climate science into the maw of our divided politics, potentially driving Republicans to reject vaccines out of partisan loyalties. It’s worth remembering that another Republican in the White House, Abraham Lincoln, signed a law in 1863 creating the National Academy of Sciences because he recognized the economic and social value of scientific progress, even during the depths of the Civil War. By rejecting decades of settled science, and lending credence to fraudulent theories, Trump does a disservice to the party of Lincoln, and to a nation that expects better.

Saturday, January 14, 2017

Trump, Vaccines, Autism

In a week packed with confirmation hearings and Russian hacking allegations, what was he doing meeting with Robert Kennedy Jr., an anti-vaccine activist pushing the thoroughly discredited idea that vaccines cause autism?
We know from way back during the Republican debates that Trump himself has dabbled in this dubious territory. One could, however, write it off as one of many campaign oddities that would surely fade away. Not so, apparently.
This is not good. The idea that vaccines cause autism originally arose in a 1998 paper in the medical journal The Lancet that was later found to be fraudulent and had to be retracted. Indeed, the lead researcher acted so egregiously that he was stripped of his medical license.
Kennedy says that Trump asked him to chair a commission about vaccine safety. While denying that, the transition team does say that the commission idea remains open. Either way, the damage is done. The anti-vaccine fanatics seek any validation. This indirect endorsement from Trump is immensely harmful. Vaccination has prevented more childhood suffering and death than any other measure in history. With so many issues pressing, why even go there?
Mariel Garza writes at The Los Angeles Times:
California lawmakers may remember Kennedy because he supported the group of people who actively (and sometimes nastily) fought SB 277, the 2015 law that ended personal and religious belief exemptions from the state’s immunization requirement for public school children. Use of the exemptions had been eroding the “herd immunity” levels in certain pockets of the state — mostly wealthier communities where it is fashionable to view vaccines as problematic as trace pesticides on produce. A measles outbreak at Disneyland in December 2014 highlighted the growing holes in the vaccination net and spurred lawmakers to pass SB 277.
Emily Willingham writes at Forbes:
Donald Trump has never been a fan of disabled people. He's got an obsession with the appearance of being "weak" or "crazy," was hyperfocused on the idea that Hillary Clinton had some kind of neurological disorder like epilepsy, which he clearly viewed as a sort of human failing, and infamously mocked reporter Serge Kovaleski. But of all of the groups out there whom Donald Trump disdains, whom his policies will endanger profoundly, autistic people stand to suffer the most.
Toying with Kennedy and bringing up autism yet again is just one way that Trump threatens this nation's autistic population. And yes, it is a threat because every time someone raises autism as a specter and consequence to fear from vaccines, autism gets cast as the bogeyman. Trump's own spouse seems to view a presumption of autism as an unforgivable insult. Vaccines aren't the really scary thing in these narratives. Autism is. When you set up a neurobiological condition as something to fear, you set up the people who are that neurobiology as fearsome, too. And that has consequences ranging from social shunning and abuse to death and more death.