ABLE Act Hearing

Autism Speaks reports:

The ABLE Act, which would allow tax-free savings accounts for people with disabilities, was warmly received today by a U.S. Senate committee which heard testimony from supportive witnesses, including Bob D'Amelio, a North Carolina advocate who spoke on behalf of Autism Speaks.

The hearing by the Senate Finance Committee's subcommittee on taxation and IRS oversight, was the first by Congress on the bill, S.313, which was introduced in February 2013. Sponsored by Sen. Robert Casey (D-PA), left the bill has 74 co-sponsors; the House version, HR.647, sponsored by Rep. Ander Crenshaw (R-FL), has 367 co-sponsors.

"No other bill in Congress has this level of bipartisan, bicameral support," said Casey, who chairs the subcommittee. "This level of support is a testament to the hard work of families and other disability advocates, many of whom are present here today. It is also reflects the importance of what the ABLE Act does."

The ABLE Act (Achieving A Better Life Experience) would mirror Section 529 college savings accounts by allowing families and individuals with disabilities to set aside tax-free savings to pay for housing, education, transportation, job support and other costs. Participants would not lose their Medicaid or Social Security benefits.

RFK Jr. and Autism One

At Left Brain/Right Brain, Matt Carey says that RFK Jr's biggest problem is not his commentary on thimerosal but his appearance at an Autism One event.

AutismOne is a staunch supporter of failed ideas like thimerosal and MMR cause autism. AutismOne is also a place that promotes the ideas that one can cure autism by chemically castrating disabled children, or making disabled children drink bleach or take bleach enemas until they pass their intestinal mucosa (which are relabeled as worms) and more.
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While multiple outlets are taking turns pointing out that you have taken a very irresponsible stance on vaccines, I’ll just ask: Mr. Kennedy, did you spend anytime looking around AutismOne? If so–why the hell have you not come forward to distance yourself from the junk science that goes on there? Why the hell did you lend your family’s name to that operation? Your family basically built the special education system in our country. The National Institute of Child Health and Human Development is named for a relative of yours. And you are loaning that name to a convention where the keynote speaker abuses autism parents? Have you sunk so low that you are lending your family’s credibility to Andrew Wakefield? 

If you were unaware of what AutismOne is, shame on you for lending your name. If you are aware of these goings on, and don’t distance yourself, your stance on thimerosal is the least of your problems.

ABA Program in Iowa

The Des Moines Register reports on Iowa's $5 million program to support ABA, which passed last year and is now going into effect.

Most private insurance plans are reluctant to cover the therapy, which can cost more then $30,000 per year. Iowa's Medicaid program has long covered it for disadvantaged children or those with severe intellectual disabilities. But until recently, the state offered no help for middle-class autistic children with average intelligence. 

Legislators almost never earmark millions of dollars for a specific treatment for any illness or disorder. Rep. Dave Heaton, who spearheaded the proposal to make an exception, said the selling point was the prospect of helping autistic children get on track. 

"If these kids don't move toward living somewhat normal lives, when they become adults, they'll be under state care for the rest of their lives, and that's very, very expensive," he said. 

Heaton, a Mount Pleasant Republican who oversees spending on human-service programs, said legislators considered requiring private health-insurers to pay for the therapy, but determined it would be a tough sell. The prospect of adding a special Medicaid program to pay for a range of autism therapies seemed too expensive, Heaton said. 

Legislators instead decided to pay directly for Applied Behavior Analysis. "Of all the things that are out there, this has been the most successful approach," he said.

Student Documentary on Vaccines

The Los Angeles Times reports on Carlsbad High School students who made "Invisible Threat," a documentary about vaccines.

Some of the students initially believed vaccines and autism were linked, they said, but changed their minds as they researched. 

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Complaints began to arise when a local newspaper reported that the students were tackling "the issue of immunizations." 

A blogger who saw the article contended that the movie, still a work in progress, was sure to be "propaganda." That led to a flurry of frightening phone calls and Internet comments directed at CHSTV, [parent adviser Lisa] Posard said.

Posard said she hadn't realized that vaccines were such a controversial subject. She and CHSTV teacher Douglas Green wanted to shut down production, she added. But the students, angered by what they saw as bullying, insisted on completing the film. 

The final version of "Invisible Threat," completed in spring 2013 but shown only to select audiences, took a strong pro-vaccine position.

Critics, who said they hadn't been allowed to see the movie, leaped back into action about a year later, when the film was set to be screened on Capitol Hill. 

Focus Autism and AutismOne organizations complained about the movie's Rotary Club backing and about the involvement of Dr. Paul Offit, a University of Pennsylvania pediatrician and immunization proponent. They argued that "Invisible Threat" was "scripted with industry talking points" and that the movie seemed to be the work of adults operating under false pretenses, not students.

The Complexity of Brain Science

At The New York Times, psychologist Gary Marcus writes:

Different kinds of sciences call for different kinds of theories. Physicists, for example, are searching for a “grand unified theory” that integrates gravity, electromagnetism and the strong and weak nuclear forces into a neat package of equations. Whether or not they will get there, they have made considerable progress, in part because they know what they are looking for.

Biologists — neuroscientists included — can’t hope for that kind of theory. Biology isn’t elegant the way physics appears to be. The living world is bursting with variety and unpredictable complexity, because biology is the product of historical accidents, with species solving problems based on happenstance that leads them down one evolutionary road rather than another. No overarching theory of neuroscience could predict, for example, that the cerebellum (which is involved in timing and motor control) would have vastly more neurons than the prefrontal cortex (the part of the brain most associated with our advanced intelligence).

But biological complexity is only part of the challenge in figuring out what kind of theory of the brain we’re seeking. What we are really looking for is abridge, some way of connecting two separate scientific languages — those of neuroscience and psychology.

State Education Agency Definitions of Autism

At Autism Research and Treatment, Malinda L. Pennington, Douglas Cullinan, and Louise B. Southern have an article titled "Defining Autism: Variability in State Education Agency Definitions of and Evaluations for Autism Spectrum Disorders." The abstract:

In light of the steady rise in the prevalence of students with autism, this study examined the definition of autism published by state education agencies (SEAs), as well as SEA-indicated evaluation procedures for determining student qualification for autism. We compared components of each SEA definition to aspects of autism from two authoritative sources: Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) and Individuals with Disabilities Education Improvement Act (IDEA-2004). We also compared SEA-indicated evaluation procedures across SEAs to evaluation procedures noted in IDEA-2004. Results indicated that many more SEA definitions incorporate IDEA-2004 features than DSM-IV-TR features. However, despite similar foundations, SEA definitions of autism displayed considerable variability. Evaluation procedures were found to vary even more across SEAs. Moreover, within any particular SEA there often was little concordance between the definition (what autism is) and evaluation procedures (how autism is recognized). Recommendations for state and federal policy changes are discussed.

RFK Jr. and Thimerosal

Keith Kloor writes at The Washington Post that RFK Jr. is getting the cold shoulder from mainstream political figures, even those on the left.

Sen. Barbara Mikulski listened impassively as Robert Kennedy Jr. made his case. He had to talk over the din in the marbled hallway just outside the Senate chambers, where he was huddled with Mikulski, two of her aides and three allies of his who had come to Washington for this April meeting. 

Kennedy, a longtime environmental activist and an attorney for the Natural Resources Defense Council, had thought Mikulski would be receptive to an issue that has consumed him for a decade, even as friends and associates have told him repeatedly that it’s a lost cause. But she grew visibly impatient the longer he talked.
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The Maryland Democrat turned from Kennedy without a word. “I want to hear what you have to say,” Mikulski said, looking up at the lean man standing next to her. Mark Hyman, a physician and best-selling author, is Kennedy’s chief collaborator on a then-unpublished book titled “Thimerosal: Let the Science Speak,” which is scheduled to come out next week. The book argues that ethylmercury — a component of thimerosal — is harmful to human health. (Not so in trace amounts, scientific authorities have concluded.) 

“The bottom line,” Hyman said to Mikulski: “We shouldn’t be injecting a neurotoxin into pregnant women and children.” Thimerosal should be taken out of the flu vaccine, Hyman and Kennedy argued. 

Mikulski didn’t react, except to suggest they contact Sen. Bernie Sanders, who “cares about brain health” and oversees a related subcommittee.

Kloor reports that Sanders had a similarly cool reaction.