Tuesday, September 23, 2014

Autism in a North Carolina Senate Ad

In North Carolina, a group supporting Senate candidate Thom Tillis is highlighting autism:


Explaining the Vaccine Theory

Many posts have discussed the theory that vaccines cause autismAt Nova, Emily Willingham and Laura Helft write of the development of the idea:
Two fears powered the unfolding of these events. One was a fear of the unfamiliar ingredients in vaccines, including the mercury-containing preservative thimerosal, which as of mid-2014 was still used in some multidose flu shots but was otherwise phased out of routine childhood vaccines in the United States starting in 2001. The other was a fear of autism, an anxiety fostered by media stories pitting emotional appeals by high-profile anti-vaccine advocates against statistically based reports by medical researchers.
These fears persisted even as evidence mounted that they were completely unfounded. Scientific verification relies on a process of testing and confirmation, not on a single observation. Researchers sincerely grappled with the question of a vaccine-autism link in numerous studies following publication of the 1998 Lancet paper. Some of these studies analyzed data from millions of people, in the quest to see if vaccines and autism might be linked. The overwhelming scientific consensus is that they are not. The Lancet paper specifically addressed a possible association between the MMR vaccine and autism, but later studies also looked at other vaccine-related factors, such as the mercury-containing preservative thimerosal, which is not used in the MMR vaccine. Thimerosal initially raised concerns because mercury is neurotoxic. However, no link with autism—not to mercury, not to thimerosal, not to any vaccines, including the MMR—has been found.
In some fraction of the American population, however, the belief in a link remains. One reason is a coincidence of timing: children are routinely vaccinated just as parents begin to observe signs of autism. Most vaccines are administered during the first years of life, which is also a period of rapid developmental changes. Many developmental conditions, including autism, don't become apparent until a child misses a milestone or loses an early skill, a change that in some cases can't help but be coincident with a recent vaccination.
Adding to such concern is the fact that, sometimes, vaccinations can lead a child to develop a high fever and accompanying febrile seizures. Such seizures are temperature-related and don't cause lasting damage. A tendency to experience febrile seizures runs in families, and about one in 20 young children will have one at some point. According to the U.S. Centers for Disease Control and Prevention, most febrile seizures happen when a child is sick rather than after a vaccination, though the MMR vaccine is associated with a slightly increased risk for febrile seizures. Children with and without autism have these febrile responses, but since their timing may coincide with emerging signs of autism, that can link the two incidents in a parent's mind, even though there is no causal relationship

Monday, September 22, 2014

Barriers to Self-Sufficiency

A release from the US Senate Health, Education, Labor, and Pensions (HELP) Committee:
At the Senate HELP Committee hearing “Fulfilling the Promise: Overcoming Persistent Barriers to Economic Self-Sufficiency for People with Disabilities,” Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, unveiled a report that he instructed his HELP Committee staff to investigate the barriers that people with disabilities face as they seek to rise out of poverty and enter the middle class....The main issue for people with disabilities over the past quarter century has been one of greater access to public services, businesses, entertainment, telecommunications, and almost every aspect of American life. Unfortunately, twenty-four years after the signing of the ADA, Americans with disabilities remain disproportionately poor and face significant barriers to joining and remaining in the middle class. Despite the greatly increased access, however, people with disabilities remain far more likely to be impoverished, to be out of the workforce, and to be experiencing the detrimental effects of living in poverty.
The full report can be found here.
Some excerpts dealing with autism (emphasis added):
  • Individuals with disabilities have the added cost of requiring or needing additional time to perform tasks and accomplish activities that someone without a disability does not have to consider or expend. For example, preparing for work in the morning may take an individual without a disability 45 minutes, including getting out of bed, washing, dressing, and eating breakfast. For a person with a physical disability, an autism spectrum disorder, a sensory disability, or an intellectual disability, the amount of time to accomplish the same tasks may be 90 minutes to more than three hours. This additional time is a huge cost burden that decreases the amount of time an individual has to prepare for daily tasks, work, or care for their own family members.
  • Another cost is the limitation in choices for some people with disabilities. Because of auditory processing or sensory input concerns, some individuals with chronic mental health disabilities or autism spectrum disorder, cannot use generally available public services. Many respondents indicated that crowded public transportation was not an option for them because of their disabilities. One person with a traumatic brain injury indicated he could not use public transportation because the tactile and auditory input overwhelmed him and he could not function after riding the bus or train.
  • Respondents also reported what they considered unreasonable requirements to receive support services and a lack of knowledge about accommodations for people with disabilities. A young man with autism in the Southwest stated he had applied for SNAP benefits. As he stated, “the law require[d] 40 job search hours per week, but transportation did not count, neither did time on the phone, and neither did Internet time unless it was at the Workforce Solutions office. I wasn’t able to meet these requirements because of transportation and other issues and would repeatedly lose food stamps after a week and have to reapply. When I asked for assistance and said I needed a reasonable accommodation—among other things, not knowing how to make a resume, I was told they had ramps (which I don’t need).”
  •  Some respondents recognized that it was not necessarily the fault of the representatives of these programs that caused problems, but the lack of adequate funding for necessary services. A middle-aged man with autism in the Pacific Northwest said, “The existing support systems are simply overwhelmed. The need is far greater than the available resources. The focus in my region is on mental health & substance abuse recovery, not dealing with developmental disabilities…I have experienced first-hand how little is known about helping individuals with developmental disabilities. Most of us are in mental health systems that often admit they have had little or no training in working with people like me.”
  • Some of the respondents told about outright prejudice regarding their disabilities. A young man with autism learned that revealing his disability would often cause more problems for him rather than allow him to work with his supervisors to develop accommodations. When describing disclosing his autism to his manager he said, “ I once disclosed to a manager confidentially because I thought it would make things easier, only to have her tell the rest of the management team and have them ‘very concerned’ about it. This was the one job I had a union rep, and he told them it had nothing to do with my job and that was not something she was supposed to go around telling everyone, not that that did much at that point. I did get the message to stop telling people.”
  • Respondents repeatedly reported interviews that were cut short once a potential employer discovered the individual had a disability. One middle-aged man with autism said, “I have had more 15-minute interviews than I can count with people who were impressed with my credentials on paper but were crestfallen to find they belonged to me. Most recently, I failed in a group interview process even though the director personally recruited me.”
  • A young woman with autism also highlighted the lack of understanding regarding accommodations and prejudice for those who request accommodations. She said, “[If you] need an accommodation like working in a quiet corner with less bright lighting…you're almost guaranteed to not get hired. Skills and abilities take a backseat to fitting in the corporate culture. What is needed isn't more legislation. What we need is education. Employers need to know that basic accommodations aren't that much of a burden, and workers with developmental disabilities need to learn to ask for what we really need in accommodations. But that's not happening. And we're not getting hired. No matter how good we are.” 

Sunday, September 21, 2014

ABLE Act Still Lives

Members of the United States Senate Committee on Finance today outlined a path forward on the Achieving a Better Life Experience (ABLE) Act. Senate Finance Committee Chairman Ron Wyden, D-Ore., Ranking Member Orrin Hatch, R-Utah, Senator Bob Casey, D-Penn., and Senator Richard Burr, R-N.C., issued the following joint statement: 
“Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act. Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.” 
The Senate Finance Committee Subcommittee on Taxation and IRS Oversight previously held a hearing to discuss the ABLE Act on July 23.

Saturday, September 20, 2014

Adults: ASD, the Cliff, Siblings

Michell Andrews writes at Kaiser Health News:
It’s getting easier for parents of young children with autism to get insurers to cover a pricey treatment called applied behavioral analysis. Once kids turn 21, however, it’s a different ballgame entirely.

Many states have mandates that require insurers to cover this therapy, but they typically have age caps ranging from 17 to 21, says Katie Keith, research director at the Trimpa Group, a consulting firm that works with autism advocacy groups. In addition, the federal Centers for Medicare & Medicaid Services recently announced that all Medicaid and Children’s Health Insurance Programs for low-income families must cover comprehensive autism treatment for kids—until they’re 21.
After I wrote about the new Medicaid coverage requirements, the mother of a 23-year-old with autism wrote in asking about coverage options for her son.
Unfortunately, once someone with autism turns 21, “they fall off a cliff,” says Lorri Unumb, vice president of state government affairs at Autism Speaks, an advocacy organization. “It’s the next big frontier that’s got to be addressed.”
Parents of older children have a few options. Some state autism mandates don’t have age caps, including New York, California, Massachusetts, the District of Columbia, Wisconsin and Indiana, according to Keith.

If an insurer denies therapy and a parent lives in one of the states that has an age cap on its autism mandate, it’s worth appealing, Unumb believes. The appeal may be bolstered, she said, by the federal mental health parity law, which bars plans from imposing quantitative or qualitative treatment limitations on mental health care that are more restrictive than those on benefits for physical health conditions.
Like dollar caps on benefits, age is a quantitative limit, says Unumb.

Although the courts have yet to address the issue, she says, “In my opinion, all of these age caps are probably invalid under mental health parity.”

Nicholette Zeliadt reports at SFARI:
Siblings of people with autism face a unique set of challenges: They have a 20-fold increased risk of developing autism themselves, and even those without the disorder may show subtle signs of autism. These traits, such as repetitive behaviors and difficulties with social interactions and communication, are collectively known as the ‘broad autism phenotype,’ or BAP.
A new study suggests that siblings with BAP tend to struggle with employment, relationships and mental health as adults. The findings, published 5 September in the Journal of Autism and Developmental Disorders, highlight the need for greater awareness of BAP in both children and adults.

Friday, September 19, 2014

Wakefield Update

The Austin American-Statesman reports:
Andrew Wakefield, who was stripped of his British medical license in 2010 after his autism research had been discredited, cannot sue a British magazine, editor and reporter for defamation in Texas, a state appeals court ruled Friday.
The articles in the British Medical Journal — raising substantial questions about the accuracy of Wakefield’s 1998 study alleging a link between autism and vaccines — did not have strong enough ties to Texas to give Wakefield access to the district court in Austin, where he lives, the 3rd Court of Appeals said.
State courts lack jurisdiction over the British publication because its 2011 articles did not concern Texas or activities that occurred in Texas, nor were they aimed at Texans, said the opinion, written by Justice Scott Field.
“The publications concerned Wakefield’s conduct and activities that occurred in England, and Texas is never mentioned in any of the articles,” Field wrote.
The court upheld District Judge Amy Clark Meachum’s decision to toss out Wakefield’s lawsuit because Texas courts lacked jurisdiction over the defendants, including reporter Brian Deer and editor Fiona Godlee.

Thursday, September 18, 2014

Disability Treaty Stalls Again

Ramsey Cox reports at The Hill:
Republicans blocked Sen. Tom Harkin’s (D-Iowa) request to vote on the United Nations' treaty for persons with disabilities.
Harkin asked for unanimous consent to debate the treaty for two hours and then hold an up-or-down vote that would require two-thirds of the Senate’s support for adoption. But Sen. Mike Lee (R-Utah) objected.
“Another sad, irresponsible day in the United States Senate,” Harkin said on the Senate floor Wednesday. “There is no controversy over this.
“Is this just another blatant form of discrimination against people with disabilities?”
Harkin pointed out that the treaty has bipartisan support. He said only Tea Party extremist who hate the United Nations oppose it.
Lee said the adoption of any treaty deserves more than two hours of debate and senators should be able to offer amendments.
Two years ago, Senate Republicans blocked the treaty on a 61-38 vote despite former Senate Majority Leader Bob Dole (R-Kan.) lobbying for adoption.