Myth about FDA Warning Lives On

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.  I also discuss the role of the Internet in spreading misinformation:

One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.

From AP:

Some health websites have misrepresented the fine print on an old vaccine label to falsely claim that the “FDA announced that vaccines are causing autism.” Vaccines do not cause autism and the U.S. Food and Drug Administration did not make any new statement this week about the long-debunked claim.

Autism was listed as one of many “adverse events” on the 2005 label of Sanofi Pasteur’s Tripedia childhood vaccine for diphtheria, tetanus and pertussis. When the vaccine was first approved, such reports were generated voluntarily by consumers and were automatically added to the FDA label, even if there was no plausible connection to the product.

The 2005 label notes that such reports do not “establish a causal relationship” to the vaccine. Since then, the FDA has changed its labeling rules and now only includes adverse events “for which there is some basis to believe there is a causal relationship,” the agency said in a statement.

Sanofi Pasteur stopped making the vaccine years ago, and its last shipment of it was in 2012.

Antivax DA Goes Down in Texas

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

In Texas primaries this week, antivaccine forces failed miserably in an attempt to oust a GOP lawmaker.  They also lost a wacky DA.

Jasper Scherer at The San Antonio Express-News:

Bexar County District Attorney Nico LaHood, who gained national attention for his anti-Islamic comments and support of a debunked claim that vaccines cause autism, was decisively defeated after just a single term by Joe Gonzales, a one-time business associate.

Gonzales jumped into what became a bitter and divisive race after LaHood, in front of a judge, threatened to destroy his legal practice.

His race was aided by nearly $1 million in donations from liberal hedge fund magnate George Soros. LaHood struck back with lurid attack ads that claimed Soros “owned” Gonzales while deriding his commitment to not prosecute prostitution.

Brian Chasnoff at the same newspaper:

For many defectors, the breaking point came in the summer of 2016, when the DA appeared in a video, seated at his desk in his office, and declared, “I'm Nico LaHood. I'm the criminal district attorney in San Antonio, Texas. I'm here to tell you that vaccines can and do cause autism.”

Criticized for the statement, LaHood once again dodged responsibility, explaining it was his personal opinion based on his experiences as a father. Few actions by an elected official, though, could cause more harm to the public, particularly to children, who face a higher risk of contracting diseases in the absence of vaccines.

Nonetheless, in both 2014 and this year, LaHood ran on a platform of protecting children. This time, his actions spoke louder than words, and voters reacted in turn.

Antivaxxer Loses in Texas

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Emma Platoff, Cassandra Pollock, and Edgar Walter report at The Texas Tribune on a statehouse race in which disgraced antivaccine doctor Andrew Wakefield backed a Republican candidate who also had the support of the state's governor.  They lost.

After Gov. Greg Abbott spent more than a quarter of a million dollars in a campaign to unseat three Republican incumbents in the Texas House, two of those incumbents nonetheless defeated their primary challengers Tuesday.

And state Rep. Sarah Davis, Abbott’s most explicit target, bested challenger Susanna Dokupil by more than 12 percentage points.

In a victory celebration, she thanked voters for re-electing her, telling them this primary race had significance far beyond her Harris County district.

“It was about whether the Republican party would be big enough to support diverse voices, and the right of a representative to vote her conscience and her district,” she said, framed by celebratory balloons.

Davis took several explicit shots at Abbott — who has called out her voting record in ways she has called disingenuous — as well as her opponent, who is backed by the anti-vaccine movement. Davis thanked her district for “supporting science and medicine — and vaccines,” to big applause.

"No amount of money in a campaign account can buy back your reputation when you squander it by making false accusations to exploit the suffering brought to us by the natural disaster that was Hurricane Harvey,” Davis said, in an apparent reference to Abbott’s claim that a Davis bill filed in 2017 might have undercut the state’s response to Harvey.

As Jonathan D. Quick and Heidi Larson write at Time, last week included a dubious milestone:

The vaccine-autism myth is one chilling example of fraudulent science. February 28, 2018 marks the 20th anniversary of an infamous article published in the prestigious medical journal, The Lancet, in which Andrew Wakefield, a former British doctor, falsely linked the MMR (measles, mumps and rubella) vaccine to autism. The paper eventually was retracted by the co-authors and the journal. Wakefield was de-licensed by medical authorities for his deceit and “callous disregard” for children in his care. It took nearly two decades for the UK immunization rates to recover. By the end, UK families had experienced more than 12,000 cases of measles, hundreds of hospitalizations — many with serious complications — and at least three deaths.

Midlife Social Outcomes

 Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Researchers are trying to fill this gap.

Megan Farley,Kristina J. Cottle,Deborah Bilder,Joseph Viskochil,Hilary Coon,and William McMahon have an article at Autism Research titled "Mid-life Social Outcomes for a Population-based Sample of Adults with ASD."  The lay summary:

This paper describes the social functioning outcomes for 169 adults with autism spectrum disorders in mid-life. Adult participants spanned the full range of functional and cognitive ability levels, with over 75% functioning in the cognitively impaired range. While summary descriptions of outcomes for this sample were similar to those reported for other groups of adults, this report provides detailed information regarding employment outcomes, social relationships, leisure activities, participation in the community, residential situations, public service use, and involvement with law enforcement.

Among other things, the article finds that only 12% of the sample had a full-time unsupported daily occupation (including postsecondary education)  and another 12% had a part-time unsupported occupation.

Trump Inspires Disability Activism

 In The Politics of Autism, I discuss the political aspects of science and public health. Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

He is now inspiring disability activism.

Abigail Abrams at Time:

During his campaign, Trump promised not to touch entitlement programs. Since taking office, however, he and the GOP-controlled Congress have pursued an agenda that could have outsized consequences for disabled Americans. Each of the GOP’s proposals to repeal the Affordable Care Act included cuts to Medicaid, the main health insurer for adults and children with disabilities. Medicaid covers services that other insurers typically do not, such as personal care assistants and lifts that allow people with disabilities to live in their own homes and communities. While the ACA repeal attempts failed, the Trump administration has now allowed states to enact work requirements for those who receive Medicaid—a policy change that experts say will likely result in many disabled people losing coverage.

The backlash from the disabled community was fierce. Activists staged a “die-in” at Republican Senate Leader Mitch McConnell’s office last June, while members of ADAPT organized an average of three protests per day across 30 states over the summer, according to national organizer Gregg Beratan. The demonstrations helped grow the group’s ranks: at least 10 new chapters have emerged since Trump took office, according to ADAPT’s Cameron. Larger chapters, like the one in Denver where ADAPT started, have seen increases in membership and donations. Before the 2016 election, the Denver chapter typically raised about $10,000 each year. In 2017 they doubled that sum. The American Association of People with Disabilities launched a National Disability Voter Registration Week in 2016; last year the number of voter registration events rose nearly 400%. An estimated 45,000 people with disabilities attended the Women’s March on Washington last year, making that day likely the largest gathering of disabled people in American history. For those who could not go in person, an online Disability March drew more than 3,000 participants.

National Autism Coordinator

In The Politics of Autism, I discuss the National Institutes of Health and the Inter-Agency Autism Coordinating Committee.

A press release from NIMH:

U.S. Department of Health and Human Services (HHS) Secretary Alex Azar has designated Ann E. Wagner, Ph.D., as the National Autism Coordinator. In this role, Dr. Wagner will play a vital role in ensuring the implementation of national autism spectrum disorder (ASD) research, services, and support activities across federal agencies. This role will complement the activities of the Interagency Autism Coordinating Committee, which includes public and federal members, takes place in a public forum, and focuses on sharing information about ongoing activities and providing advice to the Secretary of Health and Human Services on issues related to ASD.

Dr. Wagner is currently the Chief of the Biomarker and Intervention Development for Childhood-Onset Mental Disorders Branch in the Division of Translational Research at the National Institute of Mental Health (NIMH), part of the National Institutes of Health (NIH). In this role, she oversees the NIMH Autism Research Program, which supports a wide range of research on the characterization, pathophysiology, treatment, and outcomes of individuals with ASD and related neurodevelopmental disorders.

Dr. Wagner also serves as Chair of the NIH Autism Coordinating Committee, which coordinates autism-related research across several NIH Institutes and Centers and has jointly developed critical research initiatives, including the Autism Centers of Excellence and the Autism Biomarkers Consortium for Clinical Trials.

Dr. Wagner holds a Ph.D. in clinical psychology, with an emphasis in pediatric psychology, from Michigan State University. Prior to joining NIMH in 2001, she provided psychological services for children and adolescents, established and co-directed a diagnostic and treatment program for children with ASD and their families, and conducted clinical research and training at the Children’s National Medical Center/George Washington University Medical School in Washington, D.C.

Depression

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

 At The Conversation,  Chloe C. Hudson and Kate Harkness write:

Nearly half of adults with autism will experience clinical depression in their lifetime, according to our new research published in the Journal of Abnormal Child Psychology.

Depression can have devastating consequences for individuals with autism, including a loss of previously learned skills, greater difficulty carrying out everyday tasks, and at worst, suicide. People with autism should be regularly screened for depression so that they can access appropriate treatment.

Autism is a disorder that involves difficulties with social interactions and restricted repetitive patterns of behaviours. Autism also raises risk for severe mental illness.
Until now, researchers and clinicians did not know how many individuals with autism were affected by depression.

Our study, which involved a systematic review of nearly 8,000 research articles, now reveals clear evidence that depression is highly prevalent in both children and adults with autism. It also reveals that depression is more common in individuals with autism who have higher intelligence.

Charter Schools

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

The National Center for Special Education in Charter Schools has a new report titled Key Trends in Special Education in Charter Schools: A Secondary Analysis of the Civil Rights Data Collection

Excerpts:

• [Among students with disabilities} charter schools report higher percentages of enrollment of students with specific learning disabilities—the largest category of students with disabilities served under IDEA (49.49% vs. 45.98%), autism (7.2% vs. 6.53%), and emotional disturbance(5.06% vs. 4.10%) compared to traditional public schools.
• Most specialized schools (62.04%) have a focus on two or more IDEA categories. In terms of more specific disability categories,emotional disturbance (13.14%) and autism (10.95%) are the most represented 

These charter schools focus on autism:

• Arizona Autism Charter Schools Phoenix AZ 
• South Florida Autism Charter School Inc. Hialeah FL 
• The Hope Charter Center for Autism Jensen Beach FL
• Florida Autism Charter School of Excellence Tampa FL 
• Renaissance Learning Academy West Palm Beach FL 
• Palm Beach School for Autism Lake Worth FL 
• Princeton House Charter Orlando FL 
• Renaissance Learning Center West Palm Beach FL
• Margaret Brent Regional Center New Carrollton MD 
• Lionsgate Academy Crystal MN 
• Broome Street Academy Charter HighSchool Orange NY 
• New York Center for Autism Charter School New York NY
• The Autism Academy of Learning Toledo OH 
• Autism Model School Toledo OH 
• The Foundation School for Autism San Antonio TX

Senate Candidacy for Person Who Hates Autistic People?

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 science and disability issues more generally.  A Trump cheerleader is considering a Senate race in California.

Sarah D. Wire at The Los Angeles Times:

Far-right radio host and author Michael Savage says that “very important people” have asked him to run for U.S. Senate in California.

“Some very important people have come to me and said ‘Savage, would you like to run as an independent for the U.S. Senate in the state of California against the esteemed Dianne Feinstein?’” Savage said on his show, “The Savage Nation,” Friday. “I’m asking you should I run or not run?”

Savage is infamous for his verbal attacks on people with autism.

On July 22, 2008, Jacques Steinberg reported at The New York Times:

Michael Savage, the incendiary radio host who last week characterized nearly every child with autism as “a brat who hasn’t been told to cut the act out,” said in a telephone interview on Monday that he stood by his remarks and had no intention of apologizing to those advocates and parents who have called for his firing over the matter.

“My main point remains true,” Mr. Savage, whose radio audience ranks in size behind only those of Rush Limbaugh and Sean Hannity, said in the interview. “It is an overdiagnosed medical condition. In my readings, there is no definitive medical diagnosis for autism.”

On the July 16 installment of his program, which is broadcast every weekday, Mr. Savage suggested that “99 percent of the cases” of autism were a result of lax parenting. He told his audience: “They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life.’ ” Among the other admonitions he felt children with autism should be hearing, he said, were: “ ‘Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’ ”

Trump Again Talks About Mental Institutions

For many years, many people with autism and other developmental disorders languished in large institutions, some of which were snake pits.  JFK, whose sister was severely disabled, wanted to change things. 

In The Politics of Autism, I write:

Shortly after his inauguration, Kennedy created the President’s Panel on Mental Retardation. In a 1963 message to Congress, he called for a reduction “over a number of years and by hundreds of thousands, (in the number) of persons confined” to institutions for the mentally ill and mentally retarded. He said that these persons should be able to return to the community “and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though he did not use the term at the time, JFK was calling for deinstitutionalization. Over the next several decades, more and more people with disabilities such as autism would stay with their families or remain in their communities instead of entering institutions. 

Donald Trump, February 26, 2018:

You know, in the old days, we had mental institutions. We had a lot of them, and you could nab somebody like this. Because, you know, they did — they knew he was — something was off. You had to know that. People were calling all over the place.

But you used to be able to bring him into a mental institution, and hopefully he gets help or whatever — but he’s off the streets. You can’t arrest him, I guess, because he hasn’t done anything, but you know he’s like a boiler ready to explode, right? So he just — you have to do something. But you can’t put him in jail, I guess, because he hasn’t done anything.

But, in the old days, you would put him into a mental institution. And we had them in New York, and our government started closing them because of cost. And we’re going to have to start talking about mental institutions, because a lot of the folks in this room closed their mental institutions also.

Antivax Campaign in Texas

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Jessica Glenza reports at The Guardian about a Texas campaign that includes disgraced antivaccine activist Andrew Wakefield.

Anti-vaccine campaigners in the state’s biggest city are door-knocking, fundraising and Facebook-ing in hopes they can replace a moderate Republican with a conservative challenger, to represent a district that houses 2.1-miles of hospitals and research institutions.

Conservative Susanna Dokupil has received enthusiastic support from Texans for Vaccine Choice as she challenges fellow Republican Sarah Davis. Texans for Vaccine Choice declined to comment for this story. Dokupil did not respond to a request for comment.

Davis angered often women-led anti-vaccine groups, which prefer to be called “vaccine choice” or “medical freedom” campaigners, when she urged lawmakers to mandate human papillomavirus vaccines for foster children.

“There are clearly a number of candidates running with this platform front and center – vaccine choice, medical freedom,” Wakefield told the Guardian. “The members of Texans for Vaccine Choice have been very successful in their lobbying.”

“We’re seeing moderate candidates being cherry-picked out by candidates running on anti-vaccine platforms,” said Dr Peter Hotez, a tropical disease vaccine researcher at Baylor College of Medicine in Houston. Hotez, whose daughter has autism, warns that Texas could be vulnerable to a measles outbreak because so many parents have foregone shots. “They’ve clearly been very aggressive now, and have been emboldened.”

The trend appears to have spread across Texas. In recent months, high-profile politicians have questioned vaccine safety, such as the Bexar county district attorney, and state representatives and senators.

MORE ON SARAH DAVIS HERE. 

Reel People Employment

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

Valentina I. Valentini at Variety:

A few years ago, sound man Jimmy Lifton began a licensed training institute to help military veterans, including homeless vets, get jobs in below-the-line trades.

Last month his organization — the Lifton Institute for Media Arts and Sciences, or LIMS — expanded its scope with the addition of its Reel People program, designed to find jobs in film for a new group: high-functioning autistic adults.

Lifton, a producer and sound department veteran who has taken home two Daytime Emmys and five Golden Reels, has helped bring vets together with below-the-line workers he’s collaborated with through the years, many of whom are repeats to the program. When it came time to train the autistic adults — who, like the vets, are not charged for the training — he observed some of the same work ethic qualities: focus, determination, attention to detail and general stick-with-it-ness.

From Reel People:

REEL PEOPLE is a program under Plan of Action a non-profit organization specifically designed to train young adults with autism the technical trades in the film and television industry.

REEL PEOPLE is aimed to train individuals in the areas of lighting, camera operation and electrical distribution, visual effects, costume, art and set construction.

REEL PEOPLE founder, Jimmy Lifton, has been in the entertainment industry for over 40 years.

Through his experience, Mr. Lifton has identified autistic young adults with the ideal characteristics who can successfully contribute to the film and television industry.

“These people, in their own special way, have the drive for perfection, attention for detail and the work ethic to make it in this industry,” said Lifton.

Contributions to REEL PEOPLE will enable the funding for the training and job placements.
“There is no doubt in my mind that autistic adults are the ideal candidates to become highly sought-after crew members.” Lifton said emphatically.

Reel People is not your run of the mill job program for people with autism. Reel People opens a new door for these young adults to a real career field once thought beyond their reach.

“These are people who already have the passion for film and television,” said Lifton

“This gives them an opportunity that many did not think could be available to them.”

Lifton has over 40 projects under his belt since getting into the film and television industry dating back to the early 1980’s. Lifton has won 5 Golden Reels and 2 Emmys for his contributions to projects such as Kung Fu Panda and The Penguins of Madagascar.

"Essential Oils"

In The Politics of Autism, I discuss autism quackery.  At Mother Jones, Kiera Butler writes about multi-level marketing [MLM- think Tupperware] of dubious products to the autism community.

Over the past five years or so, with a big assist from DoTerra and its main competitor, an MLM company called Young Living, essential oils have taken off in the autism community. Some parents I talked to told me they spend more than $200 a month on DoTerra products. On Facebook, there are dozens of essential oil groups for parents of kids on the spectrum—the group Autism, ADHD, and Essential Oils, for example, has more than 19,000 members.
...

In 2014, the Food and Drug Administration put DoTerra on notice that its salespeople were violating federal law by claiming the company’s essential oils could cure or treat a wide variety of health problems—“viral infections (including ebola), bacterial infections, cancer, brain injury, autism, endometriosis, Grave’s Disease, Alzheimer’s Disease, tumor reduction, ADD/ADHD, and other conditions that are not amenable to self-diagnosis and treatment by individuals who are not medical practitioners.”

After receiving the FDA’s letter, DoTerra warned its army of more than 3 million wellness advocates to refrain from making such claims, but not all of them listened—as of last week, at least one representative was touting the company’s essential oils on Facebook for flu prevention. When asked about salespeople still making health claims, DoTerra’s Larsen responded in an email that the company is “committed to absolute compliance with the FDA and similar regulatory bodies around the world.”

In any case, DoTerra salespeople have found a clever workaround. Instead of explicitly touting the oils’ ability to treat autism, salespeople need only share their personal experiences, telling potential customers about, say, the time vetiver helped their child sit through math class, or how a special blend prompted little Billy to hug Grandma for the first time. This sort of anecdotal marketing worries Jeremy Veenstra-VanderWeele, an autism specialist and professor of psychiatry at Columbia University’s medical school. “People sharing their own stories—that does not really tell us much about whether a treatment works,” he says. In fact, there’s no “biological plausibility” for how an essential oil would improve autism symptoms.