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Thursday, September 3, 2015

Trump and Truthers

Emily Atkin writes at ThinkProgress:
On Thursday, the anti-vaccine website Natural News published an article cheering Trump for being “the only mainstream presidential candidate who’s spoken out about vaccine-autism dangers.” To be clear, the website is referring to the scientifically unsubstantiated belief that the Measles, Mumps, and Rubella (MMR) shot can cause autism.
“There’s only one presidential hopeful currently in the running who has been brave enough to speak out about the link between vaccines and autism, and that candidate is none other than business tycoon Donald Trump,” the article reads.
On the internet, Natural News is the central hub for vaccine truthers. In comments to ThinkProgress, one science editor described it as a “a one-stop shop … of virtually every quackery known to humankind, all slathered with a heaping helping of unrelenting hostility to science-based medicine and science in general.” It’s the project of conspiracy theorist Mike Adams, and hosts more than 2 million unique visitors every month. The site boasts more than 1.5 million “likes” on Facebook.
The site also seems to really like Donald Trump. It specifically lauded a “no-nonsense” 2012 interview the real estate tycoon gave on Fox News, theorizing that the increase in American autism rates was caused by vaccination.

Wednesday, September 2, 2015

Protest in California

In The Politics of Autism, I discuss services for the disabled.

The title of a flier being sent around by the Developmental Disabilities Provider Network & San Diego Regional Center kind of says it all: “A RALLY … AGAIN.”
The first rally of service providers to the developmentally disabled happened back in June, just after Gov. Jerry Brown kicked money for them out of the budget and into a special session.
In a report released earlier this year, the Association of Regional Center Agencies found that California spends less on each individual with a developmental disability than every other state. And yet caseloads are growing ever higher, and homes that can’t manage the financial stress are shutting down.
Speaker Toni Atkins assured service providers at the time that “#DDS funding in scope of special session on health care we’re opening Friday. Commitment hasn’t changed, only venue.”
Still, providers are on edge.
Brown tasked the Legislature with finding new revenue for the system. “We’re not dumb, we know that means taxes,” said Carlos Flores, executive director of the San Diego Regional Center, which provides services to the developmentally disabled in San Diego and Imperial counties.
Tax increases, of course, come with a high two-thirds vote bar for being passed.
“But for the sake of service providers and saving our system, I’ve just got to hope there’s a chance,” Flores said.
Susan Abram reports at The Los Angeles Daily News:
In what they called a last desperate plea, more than 100 protesters gathered in front of state Sen. Kevin de Leon’s district office Tuesday to press him and other lawmakers to boost funding for programs for those with developmental disabilities.
Demonstrators, including those with special needs, were joined by supporters from the San Fernando Valley, Pasadena and all over East Los Angeles. The protesters lined West Sunset Boulevard holding signs that said: “Fair Funding!” and “Save our Services!”
Those who work with people with intellectual disabilities have held several protests statewide aiming to persuade lawmakers to address funding before the special session currently underway ends in mid-September. They have also visited with lawmakers and held a letter-writing campaign.
Marcia Leija, a Winnetka mother of two young sons with autism, said therapy for her children is expensive. She said she is counting on the regional centers to be there when her sons are older, to help place them in programs to help them attend college and work. She worries the centers won’t be there if funding doesn’t come back.
“The quality of life of people who use these programs will go down, then their health will go down,” Leija said. “The whole system will go down fast.”

Tuesday, September 1, 2015

Molecular Diagonostic Tests

In The Politics of AutismI discuss screening and diagnosis.

Catherine Pearson reports at The Huffington Post:
Diagnosing autism is a complex and often inexact science that can involve multiple rounds of behavioral testing.
But a new study has found that two genetic tests may help doctors and parents identify certain genetic mutations that are linked to the disorder, providing a clear molecular diagnosis.
Researchers believe that the information could potentially help parents who have one child with autism spectrum disorder identify whether any future children are at increased risk, and also lead to the development of more personalized treatment plans.
In the new study, published in the Journal of the American Medical Association (JAMA) on Tuesday, a team of investigators with the Hospital for Sick Children in Toronto, Canada, performed two relatively new genetic tests on a group of 258 children who had already been diagnosed with autism to better gauge how capable the tests are at spotting genetic mutations that may contribute to autism.
Note the words could and may. Practical applications of this research are years away, at best.

Dennis Thompson reports at Health Day:
[Senior author Dr. Bridget] Fernandez expects that the effectiveness of the tests will increase over time, as researchers identify more genes related to autism. "There are still things out there that we don't know to look for," she said.
She hopes that knowledge of the genetics behind autism will lead to medications that target those particular faulty genetic pathways. In that case, these tests could help doctors prescribe appropriately targeted drugs to autistic children.
Years down the line, the tests might also be useful in screening siblings of children diagnosed with autism, to see whether they might develop problems related to autism, she said.
But at this point "the tests aren't cheap," Fernandez said. Whole-exome sequencing can run from $3,000 to $5,000, while chromosomal microarray analysis costs about $1,500, she said

Monday, August 31, 2015

Vaccination Rates

In chapter 2 of The Politics of Autism, I discuss the belief that vaccines cause autism.

Soumya Karlamangla reports at The Los Angeles Times:
The eruption at Disneyland occurred 14 years after health officials had declared the potentially deadly disease eliminated from the United States, thanks in part to childhood vaccination programs. The outbreak raised alarm that more scares could be on the way.
California lawmakers quickly moved to tamp down a growing resistance to vaccination that had been fostered in some communities by unfounded safety concerns. By summer, Gov. Jerry Brown had signed one of the nation's toughest laws to keep parents from opting not to inoculate their kids.
Nationwide data released Thursday by the U.S. Centers for Disease Control and Prevention show that although California children are immunized at a high level, the state's vaccination rate still lags behind the rest of the country.
Eric Holmberg reports at The Wilkes-Barre Times Leader:
Children going back to school in Pennsylvania could be walking into classrooms where as many as one out of every five classmates don’t have all the vaccines required by the state.
While many parents believe that disease outbreaks in school are rare because of vaccines, there were a record number of measles cases in the United States in 2014, according to the U.S. Centers for Disease Control and Prevention (CDC). The 668 cases in 27 states was the highest number since measles were considered eliminated in 2000.
And in the 2013-2014 school year, Pennsylvania had one of the worst vaccination rates in the country for the measles, mumps and rubella (MMR) vaccine, according to the CDC.
 Pennsylvania is one of 20 states that allows parents to claim a religious or philosophical exemption.
Those exemptions allow for a parent to not vaccinate “on the basis of a strong moral or ethical conviction similar to a religious belief.”
They can apply to people whose religion conflicts with vaccinations and others who believe a widely discredited study that said vaccines can cause autism spectrum disorder.
In tight-knit religious communities, there’s the potential for an outbreak. The largest measles outbreak last year (383 cases) occurred primarily among the Amish northeast of Columbus, Ohio. Pennsylvania is the other state with a large Amish population.

Sunday, August 30, 2015

Oliver Sacks, RIP

In chapter 2 of The Politics of Autism, I describe how the issue entered the national agenda.

The Washington Post reports:
Oliver Sacks, the world-renowned neurologist and author who chronicled maladies and ennobled the afflicted in books that were regarded as masterpieces of medical literature, died Aug. 30 at his home in Manhattan. He was 82.
In 1993, Dr. Sacks contributed greatly to autism awareness with his New Yorker profile of Temple Grandin, titled "An Anthropologist on Mars."  This passage is as relevant today as it was 22 years ago:
The history of autism, indeed, has been in part a desperate search for, and promotion of, “breakthroughs” of various sorts. One father of an autistic boy expressed this to me with some bitterness: “They come up with a new ‘miracle’ every four years—first it was elimination diets, then magnesium and vitamin B6, then forced holding, then operant conditioning and behavior modification—now all the excitement is about auditory desensitization and F.C.” Facilitated communication, which has been widely publicized, is based on the notion that if the hand or arm of a nonverbal autistic child is supported by a “facilitator,” the child may then be able to communicate by typing, or using an electronic communicator or a letter board. This technique was originally used, with considerable success, in children with cerebral palsy, in whom motor difficulties may make it impossible to speak. But autism is not simply a motor problem, like cerebral palsy; it is infinitely more complex. And yet the most extravagant claims have been made for the powers of F.C. in autistic people, too (that previously nonlinguistic children, for instance, have written entire autobiographies), and its proponents range from enthusiastic to evangelical. But rigorous testing suggests that, while F.C. can be useful for children with cerebral palsy or juvenile parkinsonism, its use with autistic children is much more dubious, and that in many cases the facilitator unconsciously guides the child’s hand.

Friday, August 28, 2015

Michigan Says No to Medical Marijuana for Autism

In The Politics of Autism, I discuss alternative treatments.

Bill Laitner reports at The Detroit Free Press:
Gov. Rick Snyder’s top state regulator on Thursday rejected a state panel’s advice to allow medical marijuana as a treatment for autism.
The decision followed three years of efforts by parents of autistic children, their lawyers and supporters to have Michigan become the first state to specify that marijuana could be used to treat autism.
Mike Zimmer, appointed in December as director of the Michigan Department of Licensing and Regulatory Affairs — LARA — said he was concerned that an approval would apply not just to serious cases of autism but to all cases. And he said that parents applying to use medical pot would need the approval of two medical doctors, yet there was no requirement that either doctor be experienced in treating autism.
In a four-page “Final Determination,” Zimmer said that allowing the use of medical marijuana for autism might do more harm than good to mildly afflicted autistic children. That view followed corroborating testimony in Lansing by Dr. Harry Chugani, chief of pediatric neurology at Children’s Hospital of Michigan and a national authority on autism.
In July, Chugani told the Free Press that “the vast majority of kids with autism do not need pot, and I won’t sign for it.” He said the drug should be reserved for those with “very bad behaviors, aggression, meltdowns.” Chugani could not be reached after the release of Zimmer’s order.
Orac writes:
Three weeks ago, I wrote a post likening the use of “medical marijuana” for autism to a form of quackery that I have written about many times over the years, namely so-called “autism biomed.” As I mentioned, a certain segment of the “autism biomed” movement has enthusiastically embraced medical cannabis, to be added to the other dubious treatments used to “treat” autism, such as chelation therapy, various supplements, hyperbaric oxygen, homeopathy, Miracle Mineral Solution (MMS, a.k.a. a form of bleach), and the like. (I’m talking to you, “Thinking Moms.”) As I detailed in that post, the parallels are unmistakable. In the case of cannabis for autism, there is the same evangelical embrace of cannabis as the next big thing that can help autistic children and the same dismissal of the extreme lack of evidence supporting the use of medical cannabis for autism and the lack of knowledge of the effect of long term cannabis use in very young children on their neurological development. Remember, we’re talking about children as young as three years old here and the use of cannabis over potentially many years.

Thursday, August 27, 2015

Autism Speaks and Research

Chapter 3 of The Politics of Autism discusses controversies over scientific and medical research.

At The Los Angeles Times, Steven Silberman writes:
Founded in 2005 at the height of parental anxiety about vaccines, the organization has lavished most of its funding on research uncovering prenatal risk factors for autism. It has not truly committed to serving the needs of autistic people and their families.
In 2011, the organization launched an effort with the Beijing Genomics Institute to map the whole genomes of 10,000 individuals from families with two or more autistic children, at a cost of $50 million. Meanwhile, only a tiny fraction of the money raised on walks organized by Autism Speaks goes to ensuring that autistic people who have already been born will be able to live happy, healthy, secure and productive lives.
Liz Feld, president of Autism Speaks, responds:
In 2014, Autism Speaks, along with other disability groups, led the successful effort to pass the Achieving a Better Life Experience Act (ABLE), which will allow the 58 million families affected by a disability, not just autism, to set up tax-preferred savings accounts – much like 529 college-savings accounts.
While the challenges and abilities of those living with autism vary, we know that each year there are 50,000 young adults who, at 22, age out of school-based services. Parents call this “the autism cliff.” There are few job opportunities, transition supports or independent housing options for those who want and need them. So we are working to change that. Over the past two years, Autism Speaks has held 28 town halls across the country focused on housing and employment. We are also helping employers tap into the talents and abilities of adults on the spectrum with (one of the lead developers is a young man with autism), to match job seekers to employers who have open positions.