CDC Again Finds Prevalence at 1 in 68

In The Politics of Autism, I discuss prevalence and talk of an "autism epidemic."

A release from the Centers for Disease Control:

An estimated 1 in 68 (14.6 per 1,000) school-aged children have been identified with autism spectrum disorder (ASD), according to a CDC report published today in the Morbidity and Mortality Weekly Report (MMWR) Surveillance Summary. This report shows essentially no change in ASD prevalence, the proportion of school aged-children with ASD, from the previous report released in 2014. However, it is too soon to know whether ASD prevalence in the United States might be starting to stabilize. CDC will continue tracking ASD prevalence to better understand changes over time.

The data come from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network – a tracking system that provides estimates of the prevalence and characteristics of ASD among 8-year-old children in 11 communities within Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin. The data in the latest report are for 2012 while the data in the previous 2014 report were from 2010.

Although the average ASD prevalence of the 11 ADDM Network sites combined did not change between 2010 and 2012, ASD prevalence still varied widely between the 11 communities. Differences were seen by geographic region and between sites with different access to data resources.

“What we know for sure is that there are many children living with autism who need services and support, now and as they grow into adolescence and adulthood,” said Stuart K. Shapira, MD, PhD, chief medical officer for CDC’s National Center on Birth Defects and Developmental Disabilities.

The new report also underscores where efforts and resources can be directed to better support children and families with ASD. Black and Hispanic children continue to be less likely to be identified with ASD than white children. In addition, black and Hispanic children receive developmental evaluations later than white children.

“Targeted strategies are needed to identify and address barriers in order to lower the age at which black and Hispanic children are evaluated, diagnosed, and connected to the services they need,” said Daisy Christensen, PhD, a CDC epidemiologist and lead author of the ADDM Network report.

The report also shows that, overall, less than half (43%) of children identified with ASD receive developmental evaluations by age 3. This suggests that many children may not be getting identified as early as they could be. Progress needs to be made to reach the Healthy People 2020 goal of increasing to 47% the proportion of children with ASD having a first evaluation by age 3.

“The most powerful tool we have right now to make a difference in the lives of children with ASD is early identification,” said Dr. Shapira. “Parents, childcare professionals and doctors can monitor each child’s development and act right away on any developmental concerns. It’s important to remember that children can be connected to services even before an official diagnosis is made.”

OK Autism Insurance Mandate Advances

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Barbara Hoberock reports at The Tulsa World:

A bill requiring insurance companies to cover the treatment of autistic children is headed to the Senate floor.

The Senate Appropriations Committee on Wednesday passed House Bill 2962, by Rep. Jason Nelson, R-Oklahoma City, and Sen. A.J. Griffin, R-Guthrie.

The vote was 36-3. Voting against the measure were Sens. Bill Brown, R-Broken Arrow, Nathan Dahm, R-Broken Arrow, and Anthony Sykes, R-Moore.

The measure requires coverage for the screening, diagnosis and treatment of autism spectrum disorder in individuals younger than 9 years old.

If the person is not diagnosed or treated until after the age of 3, coverage shall be provided for at least six years, provided that the child shows sufficient progress and improvement determined by the health-care provider, according to the measure.

“No insurer shall terminate coverage or refuse to deliver, execute, issue, amend, adjust or renew coverage to an individual solely because the individual is diagnosed with or has received treatment for an autism spectrum disorder,” according to the measure.

The bill would limit coverage for applied behavior analysis to 25 hours per week and no more than $25,000 a year.

Autism and Emergency Rooms

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

Shaun Heasley writes at Disability Scoop:

Adults with autism are increasingly showing up in emergency rooms, with a new study finding that such visits more than doubled over a five-year period.

In an analysis of emergency room visits across the country, researchers found that individuals with autism ages 22 to 64 accounted for 2,549 per 100,000 admissions in 2006. That figure skyrocketed to 6,087 per 100,000 admissions by 2011.

The findings, published in the April issue of the Journal of Autism and Developmental Disorders, are based on data collected through the federal government’s Nationwide Emergency Department Sample.

RRFrom the article,  "Emergency Department Use Among Adults with Autism Spectrum Disorders (ASD)" by  Rini Vohra, Suresh Madhavan, and Usha Sambamoorthi:

There were two critical findings in the descriptive analyses: (1) Majority (80 %) of adults with ASD were covered by a public health insurance as compared to one-quarter (25 %) adults without ASD. This finding reflects that public payers still account for covering ED and inpatient services among majority of adults with mental health issues such as ASD, consistent with previous studies (Ruble et al. 2005; Semansky et al. 2011); and (2) Another intriguing observation in the study was the difference in rates of inpatient admissions after an ED use among adults with and without ASD. Around one-third of ED visits among adults with ASD led to an inpatient admission as compared to onetenth of adults without ASD. This indicates that higher ED use among adults with ASD may also lead to greater hospitalization rates which is associated with high hospitalization costs (Lokhandwala et al. 2012).

Lokhandwala, T., Khanna, R., & West-Strum, D. (2012). Hospitalization burden among individuals with autism. Journal of Autism and Developmental Disorders, 42(1), 95–104.
Ruble, L. A., Heflinger, C. A., Renfrew, J. W., & Saunders, R. C. (2005). Access and service use by children with autism spectrum J Autism Dev Disord (2016) 46:1441–1454 1453
Semansky, R. M., Xie, M., & Mandell, D. S. (2011). Medicaid’s increasing role in treating youths with autism spectrum disorders. Psychiatric Services (Washington, D.C.), 62(6), 588.

Autism Research and Race

In The Politics of Autism, I discuss the relationships of autism, race, and ethnicity.

Mike Krings wrote this release for the University of Kansas:

Autism affects children from all walks of life, and education professionals need scientifically based interventions to help those affected develop reading and other life skills. However, a recent study has found that the research used to identify “evidence-based practices” very rarely reports racial and ethnic status of its participants.

That presents a problem because response to an intervention is not guaranteed and it’s not always clear why one child will respond positively to certain methods while another will not, a University of Kansas researcher has found.

“I think teachers and researchers can tend to categorize these methods with the label evidence-based practices and assume they will be effective when that’s not always the case,” said Jason Travers, assistant professor of special education at the University of Kansas and a co-author of the study. “In our field we’ve been working to identify practices that are effective for students with autism. By clarifying how racial and ethnic diversity of participants impacts intervention effects, we can increase the probability of educational benefit.”

Travers and co-authors examined 408 peer-reviewed, published studies of evidence-based practices for autism intervention. Only 73 of them, or 17.9 percent, reported the race, ethnicity or nationality of participants. And of those, white children comprised a large majority. Of the nearly 2,500 participants in the studies, only 770 reported race, and 489 or 63.5 percent were white. Multiracial participants comprised 20.6 percent; black and Asian participants represented 6.8 percent and 5.2 percent, respectively; Hispanic/Latino comprised 2.5 percent; Middle Eastern participants made up 1.3 percent, and only one Native American participant was reported.

The study was co-authored by Elizabeth West, Talya Kemper, Lisa Liberty, Debra Cote, Meaghan McCollow and L. Lynn Stansberry Brusnahan and was published in the Journal of Special Education. The authors are members of the diversity committee on the Council for Exceptional Children’s Division of Autism and Developmental Disorders.

The abstract:

 Selection of a special education evidence-based practice (EBP) requires developing an understanding of what interventions work as well as for whom they are effective. This review examined participant characteristics in the EBP literature for learners with autism spectrum disorders (ASD) identified by the National Professional Development Center on Autism Spectrum Disorders. Results indicated very limited representation of diverse participants in the entire body of research, and when reported, White youth represented a large majority of study participants. This work is an attempt to begin to better understand the extent that various contextual factors are reported in a body of literature used to identify EBPs. Implications for ASD research are discussed along with recommendations for future research.

Early Intervention Initiative in Arizona

In The Politics of Autism, I discuss screening and diagnosis. Screening has been much in the news because of the recent declaration of the U.S. Preventive Services Task Force (USPSTF), that there was insufficient evidence to support routine primary care screening of very young children for ASD

At KTAR-FM in Phoenix, Holliday Moore reports:

Research is showing we can make a reliable autism diagnosis at 18 and 24 months and researchers are working to get that age lower,” Dr. Christopher Smith at the Southwest Autism Research and Resource Center in Phoenix said.

Why does that matter to the math?

“The longer parents wait to see if their child has autism, the more time is lost,” Smith said.

With autism, every hour lost equals multiple hours of energy and money spent trying to correct dysfunctional habits later.

“Autism is a pervasive developmental delay that limits a child’s level of functioning in specific areas and separates their level of functioning from their peers,” Smith explained.
Both children and adults who are screened for autism by their primary care physician often head to SARRC if they tested positive.

During the past year, an additional 175 children between 12 and 36 months old have visited the clinic, thanks to an early intervention initiative launched by SARRC and the University of California-San Diego.

It’s called the Get SET Early Model project. The SET part stands for Screen, Evaluate and Treat. The National Institute of Mental Health funded the project.

“Five years ago, investigators at UCSD asked pediatricians to screen at well baby visits,” Smith said. “They found it significantly lowered the age of diagnosis.”

TRICARE Cut Coming This Week

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Tom Philpott writes at Military Update:

On April 1, TRICARE will cut ABA reimbursement rates as much as 15 percent, with a second rate cut planned in some locales next year. Some families are alarmed, some ABA businesses are enraged and some advocates for special needs children forecast an access-to-care crisis.

TRICARE officials see no such crisis in the offing, and hold firm to the rate cut plan. They do so despite receiving two complaint letters this month from members of Congress – one signed by four senators and another by 40 House members -- urging postponement of the rate drop until the autism care demonstration ends in December 2018 and results are assessed.

The letters echo arguments of family advocates and the growing ABA therapy industry that a pair of studies ordered by the Defense Health Agency, on which rate changes were to be based, failed to capture accurately how TRICARE reimbursements stack up against commercial insurance rates.

Festival Drops Wakefield Film

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

At The Verge, Dante D'Orazio writes:

The Tribeca Film Festival has reversed its stance on screening controversial anti-vaccination documentary Vaxxed: From Cover-Up to Catastrophe. In a statement, actor and festival co-founder Robert De Niro reiterated his earlier comments, saying, "My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family." He adds, however, that "after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for."

At Deadline, Jeremy Gerard quotes a statement by Wakefield and producure Del Bigtree:

“Robert De Niro’s original defense of the film happened Friday after a one-hour conversation between De Niro and Bill Posey, the congressman who has interacted directly and at length with the CDC Whistleblower (William Thompson) and whose team has scrutinized the documents that prove fraud at the CDC.

“It is our understanding that persons from an organization affiliated with the festival have made unspecified allegations against the film,” the statement continued, “claims that we were given no opportunity to challenge or redress. We were denied due process. We have just witnessed yet another example of the power of corporate interests censoring free speech, art, and truth. Tribeca’s action will not succeed in denying the world access to the truth behind the film Vaxxed.”

The statement did not explain how the filmmakers had been denied due process, when no issue of law has been raised with respect to the film. Nor did it address how Vaxxedwas being censored by losing its platform at TFF. No effort is being made to keep the film out of the marketplace. As reported earlier by Deadline, the selection of the anti-vaccination documentary prompted an outcry from doctors, researchers and activists against the largely discredited science behind the film.

Robert DeNiro Gives a Platform to Wakefield

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  I write that movies and television shows have popularized the idea:

In a 2005 episode of “The Shield,” a police detective and his ex-wife contemplated joining a vaccine lawsuit after their two of their children got a diagnosis. They talked to a pediatrician, who refused to help them with the suit because the science does not support the vaccine theory. The detective smelled an ulterior motive: “How many shots with thimerosal have you prescribed to kids? Saying that they’ve been poisoning our kids is just like admitting you've been doing it all along, right?” The 2008 premiere of the short-lived ABC series “Eli Stone” was about a child who had become autistic because of “mercuritol” – a fictional name for thimerosal.

Robert DeNiro, an autism dad, is giving a platform to discredited antivax doctor Andrew Wakefield.

Tara Haelle writes at Forbes:

The Tribeca Film Festival, cofounded by DeNiro, will be screening the anti-vaccine “documentary” Vaxxed: From Cover-Up to Catastrophe, a film made by Andrew Wakefield, the disgraced gastroenterologist who fraudulently attempted to link autism to vaccines and became the father of the modern-day anti-vaccine movement. Wakefield, who lost his medical license and was officially sanctioned for doctored results in his now-retracted study, has played a major role in the fear that led vaccination rates to drop, thereby bringing back diseases in outbreaks such as the Disneyland measles outbreak last year.

And now Robert DeNiro is giving this man a platform — a platform to promote a narrative that has harmed and will continue to harm autistic children and the thousands of children denied vaccines by their parents out of misguided fear.

Pam Belluck and Melena Ryzik report at The New York Times:

The plan to show the film has unnerved and angered doctors, infectious disease experts and even other filmmakers.

“Unless the Tribeca Film Festival plans to definitively unmask Andrew Wakefield, it will be yet another disheartening chapter where a scientific fraud continues to occupy a spotlight and overshadows the damage he has left behind in the important story of vaccine safety and success,” Dr. Mary Anne Jackson, a professor of pediatrics at the University of Missouri-Kansas City, said in an email.

The documentary filmmaker Penny Lane (“Our Nixon”) published on Thursday an open letter to the festival’s organizers in Filmmaker Magazine, suggesting that including “Vaxxed” in the documentary section “threatens the credibility of not just the other filmmakers in your doc slate, but the field in general.”

Katey Rich reports at Vanity Fair:

Variety even reported on the general political leanings of film-festival programming in 2014, with Toronto programmer Thom Powers saying he saw “a lot more of what I describe as left-wing propaganda films.” The conversation around autism and vaccines is not nearly as partisan as most hot topics in this country, though; anti-vaxxers are as likely to be libertarians in the heartland as they are to be crunchy San Francisco parents.

People who believe in Wakefield’s claims—or in the story that Vaxxed tells, about “whistle-blower” C.D.C. scientist William Thompson—do remain in the vast minority, which is how Vaxxed has come up for such sharp criticism. De Niro’s statement, while theoretically just asking that “all of the issues surrounding the causes of autism be openly discussed and examined,” is for vaccine supporters a call for debate where none exists. The C.D.C. and all reputable science says that vaccines don’t cause autism. The Tribeca Film Festival has chosen to program a film that says they do, and is lending a microphone to the loudest proponent of that discredited idea.

Autism & Medical Marijuana in Pennsylvania

In The Politics of Autism, I discuss alternative treatments.

Todd Bookman reports at Newsworks that Pennsylvania may soon be the first state to specify autism as a qualifying condition under a medical marijuana statute.

The plan, which cleared the House of Representatives last week by a 149-43 margin, would also include conditions more commonly found in state medical cannabis statutes, including cancer, Crohn's disease and glaucoma.

"Some people have called me and asked me and said, 'Why are you recommending this for autism?' We're not recommending anything for anything. That's up to doctors to decide," said state Rep. Russ Diamond, R-Lebanon, who sponsored the amendment to include autism.

...
While there may be anecdotal evidence, some opponents of the move point to a lack of scientific proof for the use of marijuana to ease symptoms such as anxiety. Research studies remain limited by federal prohibitions against the drug.

...
Three states — Maryland, Massachusetts and California — along with the District of Columbia don't lay out conditions in their medical marijuana statutes, but Stansky said Republican majorities in Pennsylvania's House and Senate made passing a less restrictive version a greater challenge. Last year, Delaware added autism to its official list of qualifying conditions, but only in patients who display self-injurious or aggressive behavioral symptoms.

The Pennsylvania bill still needs the approval of the Senate, which greenlighted an earlier version of the medical marijuana measure. Gov. Tom Wolf has stated he would sign the bill into law.

An Indiana Abortion Law, Disability, and Autism

Chelsea Schneider, Tony Cook and Shari Rudavsky report at The Indianapolis Star that Indiana Governor Mike Pence has just signed an expansion of the state’s abortion restrictions.

Pence, a social conservative with a long track record of opposing abortion, described the new restrictions as a “comprehensive pro-life measure that affirms the value of all human life.”
...
The measure, House Enrolled Act 1337, would make Indiana only the second state to prohibit a woman from seeking an abortion because her fetus was diagnosed with a disability such as Down syndrome. It also would prohibit abortions when they are sought based on the gender or race of a fetus, and would require the remains of miscarried or aborted fetuses to be interred or cremated.

Last week, Sandhya Somashekhar reported at The Washington Post:

The fetal anomaly provision is particularly troublesome, said Patti Stauffer, vice president of public policy for Planned Parenthood of Indiana and Kentucky. It prohibits a provider from knowingly performing an abortion sought because of “a diagnosis or potential diagnosis of the fetus having Down syndrome or any other disability,” according to the bill digest.

Clinics would need to ask women why they want an abortion. It is unclear, Stauffer said, whether the woman would be compelled to provide an answer. The bill digest says doctors could face “disciplinary sanctions and civil liability for wrongful death” if they knowingly abort a fetus because of the diagnosis of a fetal disability.

Supporters of the fetal disability provision say it is critical to prevent discriminatory selective abortions, especially in light of new tests that can tell with a high degree of certainty if a fetus is at risk of developing Down syndrome or another disorder.

What does any of this have to do with autism?  In The Politics of Autism, I explain:

When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.

The politics of the issue would be complicated, to say the least. For decades, the broader disability-rights movement has had an uneasy relationship with the movement to curb abortion. On the one hand, selective abortion angers disability rights activists, with some using terms such as “eugenics” and “genocide.” On the other hand, many of these activists also believe that the right to control one’s own body is a thread that connects disability rights and abortion rights. The growing ranks of identified autistic adults could be as conflicted as their elders in the disability rights movement. But it is also possible that they could change the issue’s political landscape by coming down heavily on one side or the other. Expect pro-life and pro-choice groups to vie for their support.

Sharron Angle Is Back

Lisa Hagen reports at The Hill:

Sharron Angle’s entry into the Nevada Senate race creates a headache for Republicans hoping to sail through a primary and focus on a tough general election.

The 2010 Republican Senate nominee’s decision to run upends the party establishment’s plan to rally behind Rep. Joe Heck (R-Nev.) in an uncontested primary as the GOP looks to flip the seat being vacated when Senate Minority Leader Harry Reid (D-Nev.) retires.

If that name sounds familiar, see these excerpts from this blog on September 28, 2010:

 Greg Sargent writes at The Washington Post:

* I wrote earlier that Sharron Angle wasn't mocking autism in that vid that's making the rounds, but Nevada writer Steve Sebelius makes a strong case that she was, in fact, expressing "skepticism that autism is a legitimate disorder."

Sebelius argues the vid reveals "Angle's utter selfishness, and her encouraging that selfishness in others. She doesn't have autism, or autistic kids, so why should she pay for them? And why should you?She's not going to have any more babies, so why should she be forced to pay for other people's? And why should you?"

* And: Eric Kleefeld points out that "it is very clear that Angle was opposing mandated health insurance coverage for various conditions, including autism." Meaning that Angle's plan wouldn't require insurance companies to cover it.

* Angle's response: Her camp puts out a statement that government allows people to "falsely label other symptoms as autism."

Sargent also writes on an attack from HHS Secretary Sebelius:

It isn't every day that a White House cabinet secretary thrusts herself this forcefully into a Senate race, but Health and Human Services secretary Kathleen Sebelius today took a very hard shot at Sharron Angle over that widely-circulated video of Angle belittling mandated coverage for autism treatment.

"It is my understanding that Sharron Angle believes that there is a hoax, under the guise of autism, where you would include requests for treatments that may not even be required," said Sebelius, who was in Nevada promoting health care reform with Harry Reid.
Sebelius pounded Angle's comments as "insulting" to parents and kids, adding: "I don't know if there is anyplace in the country where the differences in the candidates are more stark than here."

The Reno Gazette-Journal reports:

Russ Steele, a parent whose 5-year-old son suffers from autism, said Angle "owes an apology" to parents and their children with autism.

"When she mocked the very existence of autism, she crossed the line," Steele said.

"Sharron Angle owes (my son) Brandon and every other autistic child in Nevada an apology, not only for trying to undermine their insurance coverage but for mocking the very existence of autism," Steele said.

ABLE Legislation

The Politics of Autism includes a discussion of the ABLE Act.

A March 17 release from Rep. Ander Crenshaw (R-Florida);

WASHINGTON – Today, Senators Richard Burr (R-NC) and Bob Casey (D-PA) and Representatives Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX) introduced a package of bills aimed at enhancing the ABLE Act. The ABLE to Work Act builds on the success of the ABLE Act by making it possible for disabled people who work to save a portion of their income in an ABLE account without risking loss of benefits. These bills will also allow rollovers to and from 529 college savings plans as well as raise the age for eligibility from 26 to 46.

In 2014, the bipartisan group of lawmakers led the effort to pass the Achieving a Better Life Experience (ABLE) Act, which lets families who have a child with a disability save for their long-term care through 529-style savings accounts. The ABLE Act was a significant step forward and has been heralded as one of the most important pieces of disability legislation since the Americans with Disabilities Act (ADA).

...
Since the passage of the ABLE Act in 2014, 34 states have enacted ABLE programs and legislation is pending in several more states.

The ABLE to Work Act expands on the goals of the ABLE Act by encouraging work and self-sufficiency. The legislation allows individuals and their families to save more money in an ABLE account if the beneficiary works and earns income. Specifically, an ABLE beneficiary who earns income from a job could save up to the Federal Poverty Level, which is currently at $11,770. The bill will also allow ABLE beneficiaries to qualify for the existing Saver's Credit when they put savings in.

The ABLE Financial Planning Act would allow families to rollover savings in a 529 college savings plan into an ABLE account. Many families save for a child’s college education by opening a 529 account, sometimes before their child is even born, only to learn later that their child has a severe disability like autism. In other cases, a child is in a tragic accident and becomes severely disabled. In such instances, these families have funds trapped in a 529 that they could use to help cover their child’s lifelong expenses. If they withdraw the funds for anything other than college expenses, they face taxes on their withdrawals. The ABLE Financial Planning Act would help these families by allowing them to rollover the funds in their 529 account into an ABLE account for their disabled child.

The ABLE Age Adjustment Act will raise the age limit for ABLE accounts to age 46. Currently, individuals with a severe disability prior to the age of 26 are eligible to open an ABLE account. Many debilitating diseases and conditions can strike later in life, including multiple sclerosis, Lou Gehrig’s disease, or paralysis due to an accident. Increasing the age limit for ABLE accounts will allow more individuals to save in these accounts to help cover the costs of short, medium and long-term care.

SHIELD and Neurodiversity

In The Politics of Autism, I discuss popular culture's relationship to autism.

In last week's episode of Agents of SHIELD ("The Inside Man," script by Craig Titley) Phil Coulson (Clark Gregg) poses as a CDC expert at an international symposium.  The topic is a rapidly-growing group of people with special powers.  The dialogue suggests that the plot line is an allegorical take on neurodiversity:

COULSON: I don't think we've met.
ELLEN KING: [Australian accent] Ellen King. Have you found a cure for them, Doctor?
COULSON: A cure needs a disease.
...
COULSON: We can start We can start by not calling them aliens. They prefer the term "inhumans."
KING: What kind of a name is that? Is it meant to intimidate us, mock us?
COULSON: Not at all. They're just trying to find their place in the world, but they're more human than anything else, and I think it's important that we see them that way.

Okay, it is hardly clear that "inhuman" is really better than "alien," but the subtext is there anyway. Many people in the autism community object strenuously to the language of cure:  they regard autism as a neurological difference, not a disease.

At SHIELD headquarters, meanwhile, Lincoln Campbell (Luke Mitchell) and Daisy Johnson (Chloe Bennet) -- SHIELD operatives who are also inhumans -- talk with scientist Jemma Simmons (Elizabeth Henstridge) about a discovery concerning the process the triggers the Inhumans' powers.

LINCOLN: A vaccine against terrigenesis.
JEMMA: Potentially. It can't reverse the effects once someone's transformed ...
LINCOLN: This could virtually put an end to...
DAISY:  To us? I'm sorry, but isn't that what you were gonna say?

Again, many in the community are deeply suspicious of practices such as genetic screening, which they see as an effort to put an end to the presence of autistic people.

Nice Review of The Politics of Autism

Choice has a positive review of The Politics of Autism:

Pitney, John J.. The politics of autism: navigating the contested spectrum.Rowman & Littlefield, 2015. 181p index afp ISBN 9781442249608 cloth, $38.00; ISBN 9781442249615 ebook, $37.99

The content of this book is more compelling than the title would suggest. Pitney (American politics, Claremont McKenna College) looks at every aspect of autism, dissecting it in intriguing ways. After a brief history of the politics of the disorder, the author examines the dynamic forces that pull discussion of it in myriad directions. These forces include—but are not limited to—the communities of science, medicine, education, and government. Questions about autism are never fully answered because it is almost impossible to do so, given the complexity of the condition: What causes it? How is it defined? What does it mean to “have” this disorder? What are the implications for society, now and in the future? The author views autism as a “political football,” and in this book he kicks that football around from one field to another. In doing so, he draws the reader into the book and the enigma of autism spectrum disorders. A fascinating read. Summing Up: Highly recommended. Graduate students, researchers, faculty, professionals; general readers.

--J. D. Neal, University of Central Missouri

Waiting In Kansas

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

Gabriella Dunn reports at The Wichita Eagle:

McRae Wooten, a 21-year-old with intellectual and developmental disabilities who has been on a state waiting list for services for more than seven years, is about to get help.

Wooten received an offer for state services after The Eagle published a story about her last week.

Another 3,293 Kansans like Wooten are still waiting for help. Another 1,086 Kansans with physical disabilities also are waiting.

A seven-year wait is typical, according to the state. The program is funded by federal and state grants.

Wooten is diagnosed with mental retardation, developmental delays, autism and seizure disorder.

Read more here: http://www.kansas.com/news/local/article66644742.html#storylink=cpy

Autism Research, the Navy, and PTSD

In The Politics of Autism, I discuss the sources of autism research funding -- including the Pentagon.

Jennifer McDermott reports at Associated Press:

The Navy is paying for research into an app to screen for autism in the hopes that it could eventually be tweaked to look for signs of post-traumatic stress disorder.

While developmental and trauma disorders might at first appear strange bedfellows, the researchers and a PTSD expert for the VA say it could be an exciting new direction.

Facial expressions can indicate the presence of autism, PTSD and other disorders. The Autism & Beyond app uses a smartphone camera and an algorithm to read children's facial expressions and assess their emotional responses.

The app, which uses a general algorithm, could be expanded to PTSD to monitor people over time if speech and other signals are taken into account, according to Pedja Neskovic, who oversees the project in the Office of Naval Research.

...
The app, as it's designed for autism, shows funny videos designed to make children smile, laugh or express emotions. The way their head, lips, eyes and nose move is recorded, encoded and analyzed with the camera and app. If a child isn't responding, that's also classified.

Duke University is studying whether it's feasible for caregivers to screen kids for autism using a mobile phone at home. The app can be downloaded for free.

Addressing Waiting Lists in Florida

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

From Autism Speaks:

Last month, the Florida Senate and House Appropriations Committees passed budget proposals in the state that would benefit individuals with autism and the legislature has now sent the budget to Governor Rick Scott for his signature.

Estimates suggest around 1,300 people would be moved off the waiting list under the passed budget. Currently, Florida has around 20,000 individuals waiting for home and community based services and the lack of capacity puts their independence and well-being at risk.

The recently passed budget includes almost $39 million to reduce the waiting list for the iBudget HCBS waiver which serves adults with autism.

“We are incredibly grateful for the hard work by Health Care Appropriations Chairs Rene Garcia and Matt Hudson, as well as Senate President Andy Gardiner and House Speaker Steve Crisafulli,” said Angela Lello, Senior Director of Public Policy at Autism Speaks. "There is still much to be done and we look forward to working closely with the incoming Senate President Joe Negron and House Speaker Richard Corcoran as well as the House and Senate leadership to make sure that these issues remain a priority.”

The budget also includes funding to implement a revised service rate for iBudget HCBS waiver providers to address capacity restraints for waiver providers. The rate relief will assist providers who are struggling to meet their obligations under new federal labor and Medicaid rules and to continue serving individuals with varying levels of needs.

Funding also was allocated to increase rates for iBudget services including adult day training, residential habilitation and personal supports by 3%, which restores some of the rate cuts that have been implemented in recent years.

Autistic People Die Young

In The Politics of Autism, I write:

Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.

...
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.

Ariana Eunjung Cha reports at The Washington Post:

Researchers looking into mortality trends and autism have made a troubling discovery: People on the autism spectrum are dying young — some 12 to 30 years earlier than might otherwise be expected.

The analysis, conducted by Sweden's Karolinska Institute and published in the British Journal of Psychiatry, found that the leading cause of premature death in autistic adults isn't due to diseases, such as heart ailments or cancer, that are the main killers in the general population. It's suicide.

The data, which includes information on 27,000 people with the social-communication disorder and about 2.5 million who do not have the diagnosis from Sweden's national registries, found that, on average, autistic adults die 18 years younger than their non-autistic counterparts.

An autistic person's age at death also appeared to be impacted by cognitive ability. Those with autism and a learning disability died 30 years earlier on average while those without intellectual impairment died 12 years earlier. Individuals considered to be on the "high-functioning" end of the spectrum with strong language skills — those who might have been diagnosed with Asperger's before the diagnostic criteria changed — still had double the risk of dying young as those without the condition.

From a report by Autistica (UK):

New research confirms the true scale of the hidden mortality crisis in autism. The inequality in outcomes for autistic people shown by this data is shameful, but we must not forget the real individuals and families behind these statistics. Every death is a personal tragedy and a national outrage. For years, society and the healthcare system have ignored the voices of devastated families who have lost autistic loved ones unnecessarily, and far too young. That ends now. We cannot accept a situation where many autistic people will never see their 40th birthday.

National and local government, research funders and industry, as well as the NHS and service providers, all have a responsibility to step up and tackle this issue. Autistica is totally committed to playing our part, raising at least £10m of new funding through our Autism Lifesavers Fund to find answers and start saving lives.

Vaccine Refusal and Vaccine-Preventable Diseases

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.

Varun K. Phadke, Robert A. Bednarczyk, Daniel A. Salmon, and Saad B. Omer have an article in JAMA titled, "Association Between Vaccine Refusal and Vaccine-Preventable Diseases in the United States."  The abstract:

Importance Parents hesitant to vaccinate their children may delay routine immunizations or seek exemptions from state vaccine mandates. Recent outbreaks of vaccine-preventable diseases in the United States have drawn attention to this phenomenon. Improved understanding of the association between vaccine refusal and the epidemiology of these diseases is needed.

Objective To review the published literature to evaluate the association between vaccine delay, refusal, or exemption and the epidemiology of measles and pertussis, 2 vaccine-preventable diseases with recent US outbreaks.

Evidence Review Search of PubMed through November 30, 2015, for reports of US measles outbreaks that have occurred since measles was declared eliminated in the United States (after January 1, 2000), endemic and epidemic pertussis since the lowest point in US pertussis incidence (after January 1, 1977), and for studies that assessed disease risk in the context of vaccine delay or exemption.

Findings We identified 18 published measles studies (9 annual summaries and 9 outbreak reports), which described 1416 measles cases (individual age range, 2 weeks-84 years; 178 cases younger than 12 months) and more than half (56.8%) had no history of measles vaccination. Of the 970 measles cases with detailed vaccination data, 574 cases were unvaccinated despite being vaccine eligible and 405 (70.6%) of these had nonmedical exemptions (eg, exemptions for religious or philosophical reasons, as opposed to medical contraindications; 41.8% of total). Among 32 reports of pertussis outbreaks, which included 10 609 individuals for whom vaccination status was reported (age range, 10 days-87 years), the 5 largest statewide epidemics had substantial proportions (range, 24%-45%) of unvaccinated or undervaccinated individuals. However, several pertussis outbreaks also occurred in highly vaccinated populations, indicating waning immunity. Nine reports (describing 12 outbreaks) provided detailed vaccination data on unimmunized cases; among 8 of these outbreaks from 59% through 93% of unvaccinated individuals were intentionally unvaccinated.

Conclusions and Relevance A substantial proportion of the US measles cases in the era after elimination were intentionally unvaccinated. The phenomenon of vaccine refusal was associated with an increased risk for measles among people who refuse vaccines and among fully vaccinated individuals. Although pertussis resurgence has been attributed to waning immunity and other factors, vaccine refusal was still associated with an increased risk for pertussis in some populations.

More on Kevin and Avonte's Law

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

At Disability Scoop, Michelle Diament writes:

Under the bill, the Justice Department would distribute grants to state and local law enforcement agencies to pay for training, tracking devices and other efforts to help keep individuals with disabilities or Alzheimer’s disease safe.

The senators are seeking $2 million for the combined program. That’s an increase over the $750,000 in federal funds allocated to address wandering among those with Alzheimer’s in 2015, but far less than the $10 million that Schumer initially wanted.

Securing Grassley’s support, however, is seen as key because the Republican chairs the Senate judiciary committee, which would hear the bill.

“We must move rapidly to implement the potentially life-saving precautions like voluntary tracking devices that will protect our precious children,” Schumer said in a statement to Disability Scoop. “This technology will allow parents of all children with autism, no matter their means, to use the benefits of a high-tech solution to an age-old problem.”

Autistic People as Voters

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

At The Washington Post, Susan Senator writes of son's registration as a voter:

Then he signed at the bottom, in his sticklike print, and just like that, he became a voting citizen. I wanted to take a picture of him in Town Hall for the Facebook autism moms, but in my nervousness I’d left my phone in the car.

We walked back to the car through a brown, winter-weary garden lined with little American flags. I was surprised by my calm. Usually Nat’s achievements feel like such a big deal, another sparkly win for the forces of good.

Yet when I think about it, I’m kind of happy with how unremarkable the whole 10 minutes were and how friendly everyone was. Because maybe that’s how it should be, that we can take this incredibly important act for granted. Just another day at Town Hall. Except now a guy like Nat, so outwardly quiet, but with so much going on inside, can be heard, just like everyone else.

House Letter on TRICARE

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Amy Bushatz writes at Military.com:

A bipartisan group of 40 House lawmakers has asked the Defense Department to delay plans to cut Tricare autism therapy payments by up to 15 percent.

"We are writing to express our continued concerns regarding the Defense Health Agency's (DHA) proposal to reduce Tricare reimbursement rates in 2016 for Applied Behavior Analysis (ABA) to beneficiaries diagnosed with Autism Spectrum Disorder (ASD)," the letter sent March 9 says. "We remain concerned that the new rates could result in a substantive reduction in access to crucial ABA services for the more than 26,000 military children with ASD."

The letter, sent to Defense Secretary Ashton Carter, was signed by 21 Republicans and 19 Democrats. Rep. Chris Smith, R-New Jersey; Rep. Mike Doyle, D-Pennsylvania; Rep. John Larson, D-Connecticut; and Rep. Thomas Rooney, R-Florida, are the letter's original co-signers. Smith and Doyle co-chair the Congressional Autism Caucus, while Larson and Thomas have long worked on Tricare and ABA therapy coverage issues in the House.

Media Hype and the Antivax Movement

In The Politics of Autism, I write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk."

A couple of years ago, Ken Reibel wrote at the Huffington Post:

April is Autism Awareness Month, when the words "Somebody get me an autism story" can be heard in newsrooms across the country. Some reporters will answer the call with accurate, nuanced, informative pieces that add value to the public's store of knowledge. Others will just phone in their reports, literally and figuratively. And a few will embarrass themselves.

Annalisa Merelli writes at Quartz:

David McCandless, an author and designer who founded the data visualization site Information is Beautiful, decided to examine how media hype amplified humanity’s fears—from asteroids to swine flu.

Using primarily Google Trends data (and the now defunct News Timeline function), he collected headlines from news sources related to big threats such as SARS in China, asteroids, or the (nonexistent) link between vaccines and autism.

... 

The visualization shows a seasonality of fears, because media cycles tend to touch on the same subject at the same time of the year. Every April there is a peak in mentions related to the dangers of violent video games, the result of stories on the anniversary of the 1999 Columbine High School massacre.

McCandless made the first version of Mountains of Molehills (included in his book Knowledge is Beautiful) in 2007, and has been updating it since. In 2010, when he presented it at a TED conference, the biggest molehill was related to the swine flu outbreak in the UK.

Treatment and Autism Research Priorities

In The Politics of Autism, I discuss the incentive structure facing academic researchers:

This diversity of research agendas is partially a result of uncertainty. Amid the darkness, it might make sense to shine searchlights in all directions. Some of it may also stem from the availability of autism research money at a time of tight science budgets. To put it bluntly, publication-hungry scientists may have an incentive to rebrand marginally-relevant work as autism-related. Describing her study of how experts on sex differences have landed on the “biomedical platform” of autism, science historian Sarah Richardson says they “have begun to link their very basic research -- even if it’s on nematodes [roundworms] -- to frame it as a contribution to autism.”

At Autism, Luc Lecavalier writes:

As an exercise, I reviewed the content of three journals with the highest impact factors among journals focusing exclusively on ASD research: Autism Research, Journal of Autism and Developmental Disorders, and Autism: International Journal of Research and Practice. According to the ISI Web of Knowledge, the 5-year impact factor for all three journals was above 3.8, and they were in the top 10 Developmental Psychology journals in 2014. From 2010 to 2015, they published a total of 171 treatment studies. To put things into perspective, 2,358 papers were published in these three journals over that 6-year period. This means that about 7% of articles were devoted to treatment studies.[ emphasis added] This 7% sounds less impressive than 171 studies, an absolute number that is far larger than what was published in a 6-year span 25 years ago. Of course, many treatment studies are published in other high-profile journals because of their potential impact.

Why relatively so few treatment studies? Because they are labor-intensive and expensive. Study teams (e.g. therapists, physicians, blind evaluators, research coordinators, parents, and children) take part in repeated visits and assessments. Randomized controlled trials (RCTs) do not mesh well with academic environments that reward speed and quantity. Involved treatment studies are not the untenured scholar’s friend. [emphasis added] For instance, both our recent parent training trial (Bearss et al., 2015) and atomoxetine and parent training study (Handen et al., 2015) took about 6 years to execute. This number approaches 10years when including grant and manuscript writing.