Brown Signs Bill to Address Dangers on the School Bus

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- such as dangers on the school bus.

KCAL-TV reports:

The parents of a special-needs student who died after being left on a school bus in Whittier on a hot summer day thanked Gov. Jerry Brown on Wednesday for signing legislation that requires school buses to have an alarm system to ensure students are not left behind.

“Although we tragically lost our son Paul last year after he was left behind on a school bus for seven hours, we know that the signing of this bill is a warm hug from heaven that will enable all children who ride a school bus to arrive at their destination safely,” said Eun Ha Lee, mother of Hun Joon “Paul” Lee.

The 19-year-old with autism died after being left on a bus for nine hours in 90-degree heat Sept. 11, 2015.

Senate Bill 1072 or the Paul Lee School Bus Safety Law, authored by Sen. Tony Mendoza, D-Artesia, will require school buses in California to be equipped with child-safety alarms beginning 2018.

The alarm system triggers a loud sound when the bus is turned off. The driver must walk to the back of the bus to turn off the alarm, and at the same time check to make sure no students are still on board.

Proposed ABLE Act Changes

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

A September 21 release from Senator Richard Burr (R-NC):

The Senate Finance Committee today advanced the ABLE to Work Act and the ABLE Financial Planning Act – two bills sponsored by Senator Richard Burr (R-NC) and Senator Bob Casey (D-PA) aimed at enhancing ABLE accounts. The ABLE to Work Act builds on the success of the ABLE Act by making it possible for people with disabilities who work to save an additional amount in an ABLE account without risking loss of benefits. The ABLE Financial Planning Act will allow financial rollovers from 529 college savings plans to ABLE accounts.
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Background:

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.

Text of the ABLE to Work Act is available here.

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 could incur a disability from a tragic accident. 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 child.

Text of the ABLE Financial Planning Act is available here.

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).

Read Senator Burr’s op-ed on the ABLE Act here.

A Dubious Event

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

Seema Yasmin writes at The Dallas Morning News:

An autism summit in Dallas this weekend features medical professionals who have been disciplined for mistreating children, alongside celebrities who shun science and claim vaccines are dangerous. Autism advocates say the event offers false hope to parents by promoting miracle cures and treatments proved to be dangerous and ineffective.

The Autism Education Summit is hosted by Generation Rescue, an organization co-founded by anti-vaccine advocate Jenny McCarthy, who has a son with autism. McCarthy will be joined by Bexar County District Attorney Nico Lahood, who also claims vaccines cause autism.

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"A number of these speakers are opportunists and predators who prey on the fears and the desperation of parents who have kids with autism," said Dr. Peter Hotez, a pediatrician at Baylor Medical Center in Houston whose daughter has autism. "I understand how desperate and hopeless a parent can feel having a child with autism and it doesn't get better with age because now we're dealing with a young adult with autism."

Studies show one third to 43 percent of families pay for sometimes costly and often unproven alternative treatments for children with autism.

Hotez is concerned that the autism summit is using high-profile speakers to sell false hope to parents like him. "These speakers are offering every type of flim-flam therapy you can imagine, from hyperbaric oxygen therapy to chelation. There's one guy who says autism is caused by parasitic worms," Hotez said.

Autism and Employment

In The Politics of Autism, I discuss the employment of autistic adults.

Abigail Abrams writes at The Washington Post:

Federal law obligates educators to help children with disabilities develop a plan for entering adulthood, but a2014 report from the A.J. Drexel Autism Institute found that just 58 percent of high school students with autism had such a plan by the required age. Once individuals with autism leave the education system, they lose access to support services, specialized counselors and the routine of a structured environment.

“When people hit 21, they call it a cliff. The services really do fall off, particularly for individuals who have gone to college, because I think the expectation is that, ‘Well you’ve made it through college, getting a job should be the easy part,’ ” said Marcia Scheiner, who runs a program based in New York to help adults with Asperger’s syndrome — a mild kind of autism — find competitive jobs. She started the program after seeing the challenges her own son faced because of Asperger’s.

The 2014 report found that two-thirds of young people with autism did not move on to employment or other education in the first two years after leaving high school, and for more than a third, this continued into their 20s. Young adults with autism were also more likely to be unemployed than their peers with other disabilities. Employment data is scarce for autistic individuals, but researchers have estimated that between 70 and 90 percent of autistic people are unemployed or underemployed nationally.

“Until we as a society, from government through everything, see that a nation that has a 70 percent unemployment rate for people with autism and people with disabilities is a problem, it ain’t going to work. We have to make a critical commitment that this is wrong,” said Scott Badesch, president of the Autism Society, a national advocacy group.

Rumor Communities

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

At Social Science Quarterly, Jill A. Edy andErin E. Risley-Baird have an article titled "Rumor Communities: The Social Dimensions of Internet Political Misperceptions."  The abstract:

Objective

This study illuminates the communicative and social qualities of naturally occurring public resistance to authoritative debunking of political misperceptions, rumors, and conspiracy theories. Developing the concept of a “rumor community,” it highlights aspects of rumoring processes overlooked by psychological approaches common in misperception research.

Methods

Over 2,000 user-generated comments from the “vaccines cause autism” rumor community, produced as the medical study that had sparked the rumor was retracted and ultimately denounced as fraudulent, are examined for their contribution to the public conversation about vaccine safety.

Results

Rumor community members publicly counterargue debunking messages, which creates a communication environment offering argumentative resources to community members and reaffirming the community's solidarity. Members assert their credibility to gain authority to speak, countering science with personal experience. Highlighting their interconnection with more conventional social groups and venerable social truisms, members generate discourse that legitimates their beliefs.

Conclusions

The process of rumor debunking does not solely involve psychological persuasion but must also account for the social geography of rumor communities and their contributions to the communication environment.

From the article:

Little is known about how such source credibility claims impact audiences, but enticing anecdotal evidence suggests eyewitness authority may be distinctively powerful in online political communication. Research in another online political context revealed that factual evidence was contested, but personal experience was accepted as incontrovertible (van Zoonen et al., 2007). The rumor community’s personal experiences may thus be a uniquely powerful tool for resisting the scientific discourse in debunking messages.

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The response of the vaccines-cause-autism rumor community to repeated debunking of its central raison d’etre reveals ongoing work to preserve ambiguity. Anecdotal evidence from other high-profile political misperceptions, such as the “birther” community, suggests this may be a typical response from a threatened rumor community. This  lluminates the function of some psychological counterarguing that may undermine attempts to debunk rumors. Yet, a second challenge for rumor debunking arises  pecifically from public expression of counterarguments. Public counterarguments may serve as a source of social support for the rumor community, reminding members that others share their beliefs and providing them with new resources for resisting debunking  essages. Recognizing that rumor believers not only hold beliefs individually but may also participate in communities that help them sustain their beliefs suggests the process of rumor debunking is not just one of psychological persuasion but must also take into account the social geography of rumor communities. Indeed, future research on political misperceptions should investigate whether members of a rumor community develop a group identity such that renouncing a misperception carries the risk of social sanctions from fellow group members. Future research should also explore interactions between community members in public spaces, for while public expressions of shared belief may be enough to sustain a community, building it is almost certainly an interactive process.

The ways rumor community members establish credibility to address the misperception also reveals a communication environment much changed from that of early studies of how public officials regained control of a rumor. The more diffuse political  ommunication environment made possible by the Internet (Stroud, 2008), and the decline in widely accepted social authority (Quandt, 2012), may mean social authorities may have less power to stymie rumors than earlier scholars ascribed to them (e.g., Larsen, 1954). Eyewitness authority grounded in personal experience may trump official or scientific explanations in Internet contexts, raising new challenges for those seeking to debunk misperceptions.

A rumor’s survival may depend not only on preserving ambiguity, contesting institutional authority, and providing social support to a community of believers. Misperceptions may also survive because they effectively express venerable truisms of political culture. Many of the vaccines-cause-autism rumor community’s comments express widely shared political stances and social values such as distrust of big business, government, and news media. They also express solidarity with respected social groups, parents, and the autism community. A modernist take on these types of appeals might classify them as conspiracy theories, amplifying the unlikely and elaborate connections between social actors implied in such theories. However, the essential appeal of many conspiracy theories is that they speak to deep-rooted beliefs about how the social world works. The more effectively they embrace those beliefs, the greater their likely staying power and the greater the risk they will not only survive but potentially spread to broader publics.

• Larsen, O. N. 1954. “Rumors in a Disaster.” Journal of Communication 111–23
• Quandt, T. 2012. “What’s Left of Trust in a Network Society? An Evolutionary Model and Critical Discussion of Trust and Societal Communication.” European Journal of Communication 27(1):7–21.
• Stroud, N. J. 2008. “Media Use and Political Predispositions: Revisiting the Concept of Selective Exposure.” Political Behavior 30:341–66.
• van Zoonen, L., F. Muller, D. Alinejad, M. Dekker, L. Duits, P. Vis, and W. Wittenberg. 2007. “Dr. Phil Meets the Candidates: How Family Life and Personal Experience Produce Political Discussions.” Critical Studies in Media Communication 24(4):322–38.

Autistic People Face Barriers to Health Care

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Dora Raymaker and colleagues have an article in Autism titled "Barriers to Healthcare: Instrument Development and Comparison between Autistic Adults and Adults with and without other Disabilities."  The abstract:

Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

From the article:

In summary, autistic adults experience many similar barriers to healthcare access as people with other types of disabilities; however, they experience them at higher rates, and also experience unique autism-specific barriers that may be less likely to be addressed in modern healthcare systems.

Autistic adults in our study experienced many of the barriers identified in studies of adults with other disabilities, such as increased socio-economic barriers, difficulty getting sufficient support, and discrimination (World Health Organization (WHO), 2011; WHO, 2013). There were also similarities between the autistic and disability groups in barriers related to executive functioning. Difficulties with planning, sequencing, and understanding complex instructions are reported by many individuals on the spectrum (Landa and Goldberg, 2005) as well as by others (e.g. those with traumatic brain injury, intellectual disability, attention-deficit hyperactivity disorder). Interventions targeted toward improving healthcare access for people with disabilities more generally may also help autistic people, and existing literature and interventions related to these items may be transferrable to autistic patients.

Results also reflect the differences in barriers autistic individuals may experience due to characteristics associated with ASD; specifically, barriers related to emotional regulation, patient-provider communication, and sensory issues.
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We recommend that clinicians, disability support professionals, and policy makers be aware of the barriers to healthcare access commonly faced by individuals on the autism spectrum, and work with individuals and systems to reduce those barriers.

• Lagu T, Iezzoni LI and Lindenauer PK (2014) The axes of access–improving care for patients with disabilities. The New England Journal of Medicine 370: 1847–1851.
• World Health Organization (WHO) (2011) World Report on Disability. Geneva, Switzerland:WHO.
• World Health Organization (WHO) (2013) WHO | Disability and health. Available at: http://www.who.int/mediacentre/factsheets/fs352/en/index.html

Junk Science and Autism

Junk science is a big problem for the autism community, whether it involves the discredited vaccine theory or the bogus "complementary and alternative" treatments that unscrupulous vendors peddle to desperate parents.

In The Politics of Autism, I write:

Many articles and blog posts arguing for the vaccine-autism link have the trappings of genuine academic research: tables, graphs, citations, and scientific jargon. Some of the authors have credentials such as M.D. or Ph.D. degrees. None of these things is a guarantee of scientific value, as the history of science is full of crackpot theories (e.g., AIDS denialism) that are the heavily-footnoted products of people with letters after their names. But most people will not be able to spot the scientific weaknesses of such work. Outside of academia, few understand concepts such as peer review. Jordynn Jack describes one dubious article that appeared in a non-peer-reviewed publication: “Regardless of the scientific validity of the article, though, the writers perform the writing style quite effectively. It would be difficult for the layperson to distinguish this article from any other scientific research paper, especially if one did not investigate the nature of the journal … or of the scientific response to the article.”

Alisa Opar writes at The Atlantic and Spectrum:

For most parents, who have little understanding of how science is done, wading through claims made about alternative treatments can be befuddling. Even when someone knows to search PubMed, an online database of journal abstracts, she might not understand that obscure journals tend not to be taken seriously, and might not pick up on the difference between types of studies. A case report about a single child may be of purely scientific interest as an avenue for further investigation, for instance, whereas results from a rigorous randomized controlled clinical trial with a large number of participants can provide solid information on whether a treatment works.

What’s more, media outlets often exaggerate the significance of findings. Take secretin, a peptide hormone that stimulates the secretion of digestive fluids from the pancreas. In the late 1990s, three children with autism were reported to improve dramatically after taking secretin. (The caveat is that this was an unblinded study—that is, the investigators were aware that all three children had received secretin and not a placebo.) Word spread, parents heard about it on the news, and demand for secretin skyrocketed. But more than a dozen subsequent double-blind studies—in which neither the families nor the researchers knew which participants were in the placebo arm—found no evidence of effectiveness.

“As a scientist, you can end up on the front page of the science section of The New York Times with a new link to autism, but not really know if it’s causal,” says Catherine Lord, a clinical psychologist who heads the Center for Autism and the Developing Brain at New York-Presbyterian Hospital in New York City. In other words, just because researchers find a connection between autism and a gene or some other factor does not mean that it causes the condition—or that blocking it can reverse the effects of autism. “I think it’s probably very confusing for parents. So when someone says, ‘I can take what that scientist said and make it meaningful for you right now,’ that’s incredibly appealing.”