Evaluating ABA

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Mojgan Gitimoghaddam, Natalia Chichkine, Laura McArthur, Sarabjit S. Sangha & Vivien Symington have an article at Perspectives on Behavior Science titled "Applied Behavior Analysis in Children and Youth with Autism Spectrum Disorders: A Scoping Review."  The abstract:

This manuscript provides a comprehensive overview of the impact of applied behavior analysis (ABA) on children and youth with autism spectrum disorders (ASD). Seven online databases and identified systematic reviews were searched for published, peer-reviewed, English-language studies examining the impact of ABA on health outcomes. Measured outcomes were classified into eight categories: cognitive, language, social/communication, problem behavior, adaptive behavior, emotional, autism symptoms, and quality of life (QoL) outcomes. Improvements were observed across seven of the eight outcome measures. There were no included studies that measured subject QoL. Moreover, of 770 included study records, only 32 (4%) assessed ABA impact, had a comparison to a control or other intervention, and did not rely on mastery of specific skills to mark improvement. Results reinforce the need for large-scale prospective studies that compare ABA with other non-ABA interventions and include measurements of subject QoL to provide policy makers with valuable information on the impacts of ABA and other existing and emerging interventions.

From the article:

Most of the current literature surrounding ABA-based interventions lacks investigations into the QoL of children with ASD and instead focuses on aberrant behaviors (Reichow et al., 2018; Whitehouse et al., 2020). A recent meta-analysis found that, upon analyzing five articles of higher scientific credence, none conducted investigations into the changes with respect to QoL for the children or parents (Reichow et al., 2018). The present scoping review likewise found no occurrences of subject QoL measures in the sample analyzed. Overall changes in QoL for children living with ASD is of the utmost importance, as QoL is “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHO, 1997, p. 1). The continued lack of research into long-term effectiveness of ABA treatments is an ongoing concern and should be a focus of future research to help measure QoL (Whitehouse et al., 2020) and also to investigate any possible adverse effects (Rodgers et al., 2020). For example, recent literature investigating adults with ASD who participated in ABA treatments when they were young has shown increases in incidences of posttraumatic stress disorder (PTSD); this is an emerging field of research in adults with ASD and should be further investigated through long-term studies (Kupferstein, 2018).

Antivax Profit

  In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

Moises Velasquez-Manoff at NYT Magazine:

Numerous experts told me that a good way to understand what motivates many players in the anti-vaccine movement is through the lens of profit. There are several levels of profiteering. The first involves social media companies. Historically, the algorithms that drive their platforms, some argue, have fed users more and more of what they respond to without regard for whether it’s true. “It’s not some sophisticated technology,” says Hany Farid, a professor at the University of California, Berkeley, who studies misinformation on social media. “It turns out we’re primitive jerks. And the most outrageous stuff, we click on it.”

...

Peter Hotez, of Baylor College of Medicine, points to the many anti-vaccine books sold on Amazon, some of them best sellers in their respective categories. Amazon, he says, is probably the largest purveyor of anti-vaccine books in the world. And then there are the individual figures who create anti-vaccine content. The Center for Countering Digital Hate, a nonprofit headquartered in Washington, published a report in March last year titled “The Disinformation Dozen.” It estimated that around two-thirds of all anti-vaccine content on Facebook and Twitter comes from just 12 sources, including Kennedy’s Children’s Health Defense. If social media platforms simply enforced their own standards on these 12 people and their organizations, the report argued, most vaccine-related disinformation circulating online might disappear.

Facebook strongly disputes this finding. Simpson, the spokesman, says that the center does not clearly lay out how it defines anti-vaccine content, and its analysis focused on an overly narrow set of content — just 483 posts from 30 groups — that wasn’t representative of the hundreds of millions of posts about Covid-19 vaccines that users have actually shared. By the company’s own calculation, content from these 12 personalities accounted for just 0.05 percent of the total views of vaccine-related content. Nonetheless, more than three dozen pages associated with these individuals have been removed, a process that Simpson says was already underway when the Center for Countering Digital Hate put out its report. Imran Ahmed, chief executive of the center, says of Facebook’s challenge to its work, “If they had any questions about methodology, they had a year and a half to ask us.”

Some “disinformation dozen” figures, like Joseph Mercola, an osteopathic physician, offer products directly. He presides over a multimillion-dollar business selling supplements and other merchandise online. (Mercola’s businesses and brand is worth more than $100 million, according to a 2017 affidavit he filed for insurance purposes.) Customers may reach his storefront through a circuitous route, which, according to Ahmed, is also a common occurrence in the anti-vaccine universe: Seemingly distinct websites are linked to one another, forming a gigantic virtual spider web to trap unwitting visitors.

Inequitable Access in California

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with Califorinia's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

A news release from Public Counsel:

– A new report from Public Counsel shows that a six-year, $66 million effort by the State of California to reduce inequitable access to developmental services for children has been largely ineffective and that inequity “continues to plague communities of color.” The report evaluates the outcomes of a disparity reduction program established by the state in 2016 to reduce inequities within California’s regional center system – a network of state-funded but independently run agencies charged with providing services to Californians with developmental disabilities.

“Our report confirms what many families and advocates have said for years – this system is broken,” said Brian Capra, the report author and senior staff attorney with Public Counsel. “While California’s efforts were well-intentioned, its piecemeal approach to reform is inadequate for fixing deep, systemic discrimination that has dogged this system for decades. Tragically, our findings indicate that many racial and ethnic disparities have only gotten worse, and the most disadvantaged families continue to get the least amount of support.”

The report’s findings include:Inequitable funding is worsening between white and Latino children at most regional centers.Disparities in service expenditures between Latino and white children have improved in four regional centers over the past six years but worsened in the other 17 regional centers.Disparities for Asian children have worsened statewide over the past six years, yet the state does not have improvement goals for this population.Without explanation, California’s Department of Developmental Services (DDS) has not assigned improvement targets for Asian children in its disparity monitoring process and has not been tracking this group’s inequitable trajectory under this process.Disparities between children of “other ethnicity” and white children are the most profound among all race/ethnicity groups and are worsening.As with Asian children, DDS has not assigned improvement targets for “other ethnicity” children in its disparity monitoring process and is not tracking this group’s worsening plight under this process.
Children with “other ethnicity” are the fastest-growing race/ethnicity group.

For 30 years, advocates and families have raised concerns about disparities in service access. An L.A. Times exposé in 2011 revealed stark racial differences in services for children with autism, prompting then State Senator Darrell Steinberg to create a Task Force on Equity and Diversity that identified dozens of recommendations for reform – many of which remain unimplemented. Public Counsel’s report calls for a joint legislative oversight hearing to thoroughly review the worsening predicament, noting that there “have been just two legislative hearings dedicated exclusively to examining funding inequities” (in 2012 and 2017), and neither consisted of a fully impaneled set of legislators from both the Senate and Assembly.

“California’s elected officials and decision-makers have been aware of these inequities for well over a decade, yet we still have a system of separate and unequal services for children with disabilities,” said Sharon Balmer Cartagena, directing attorney of Public Counsel’s Children’s Rights Project. “A family’s race, geography, and language should never influence the services a child receives from the state of California to treat developmental disabilities. Yet each year, this discrimination is allowed to persist, and it is time for a full overhaul of this system.”

The report identifies nine recommendations for addressing the system’s problems. For example, it highlights that the Department of Developmental Services (DDS) has a flawed funding methodology that perpetuates the system’s inequities: “DDS’ current budgeting formula allocates funding to regional centers not according to their consumers’ needs but on what the regional centers have previously spent.” The formula results in drastically different spending on services for children – often thousands of dollars or more annually – even between regional centers within the same city.

“Sadly, California’s regional center system still operates haphazardly with wild inconsistencies in funding,” said Capra. “DDS continues to use a convoluted funding formula that gives unequal resources to different regional centers and employs a laissez-faire approach to service delivery that allows inequities to fester. We are proposing a targeted spending plan for each regional center to provide earmarked funding to unserved and underserved groups to bring them closer to funding equity with their white peers.”

In another example of haphazard oversight, the report found that DDS has allowed regional centers to categorize their clients such that “other ethnicity” is now a predominant racial category at many regional centers, even though U.S. Census data for local population characteristics indicate otherwise. The report states there is a “burgeoning population of children of ‘other ethnicity’ who currently suffer from these inequities in relative anonymity.“

In addition to inequities in service delivery connected to race, the report found that significant gaps persist in services between English-speaking and Spanish-speaking children. While disparities in service expenditures between these groups improved in eight regional centers over the past six years, the disparities worsened in the other 13 regional centers.

In a positive finding, the report identified that service delivery for Black children improved significantly over the past six years: “This is one instance where considerable progress has been made in reducing funding disparities.”

In another positive finding, the report identified that the South Central Los Angeles Regional Center (SCLARC) made significant progress in reducing service disparities among its clients: SCLARC was “single-handedly responsible for causing a five percentage point increase in disparity reduction improvement to the statewide aggregate data for Hispanic children and an eight percentage point increase in disparity reduction improvement to the statewide aggregate data for Spanish-speaking children.” It was able to make these improvements by “more than doubling its total expenditures in the past year for its children ages 3 through 21” (from around $65 million to $137 million) while keeping the size of this group essentially unchanged.

In one of its recommendations, the report suggests that “one potential model could be a targeted spending plan that effectuates more equitable results similar to those recently achieved by SCLARC during the 2020-2021 fiscal year.”View the report here
View the report fact sheet here (ENGLISH)
View the report fact sheet here (SPANISH)

Nonspeaking Autistic Man to Graduate from UCLA

 In The Politics of Autism, I discuss the growing number of college students on the spectrum.   Some are nonspeaking.

At KCBS-TV, Kandis Crone reports on Woody Brown, who is becoming UCLA's first-ever nonspeaking autistic graduate.

 

Autistic College Students

 

 In The Politics of Autism, I discuss the growing number of college students on the spectrum. 

Liann Herder at Diverse: Issues In Higher Education:

Dr. Lee Burdette Williams, executive director of the College Autism Network (CAN) that connects institutional stakeholders to improve the access, experiences and outcomes of college students with autism, said that students like Bonker are constantly fighting against the misconceptions of the world and higher education, including the surprise some feel that a nonspeaking or autistic student could graduate at the top of their class.

“The most common misconception about autism is that the label of autism is synonymous with developmental or intellectual delays,” said Williams. “The truth is, some with autism have intellectual or developmental delays, but lots do not. The diagnosis is problematic, because it does put a lot of very different people in one bucket.”

Academic acceptance of autistic students has come a long way in the last few decades. Dr. Jane Thierfeld Brown, an assistant clinical professor at Yale University’s Child Study Center and director of the College Autism Spectrum (CAS), an organization that helps students with autism and their families navigate the shift from high school to college, said this growth is perhaps a reflection of the increasing number of individuals born with or diagnosed with autism.

...
At Adelphi University in New York, the Bridges to Adelphi program has been working to support students with autism since 2008, when it began as a pilot program with the Jewish Child Care Association. By 2014, the program had become embedded into Adelphi, and it is now one of the roughly 75 institutions in the U.S. working to serve those with autism.

The Antivax Movement

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

Moises Velasquez-Manoff at NYT Magazine:

California-based anti-vaccine groups had long used the hashtag #cdcwhistleblower on Twitter, a reference to the spurious claims of C.D.C. malfeasance that would be central to Wakefield’s conspiratorial documentary “Vaxxed.” But the hashtag only occasionally traveled beyond the confines of the anti-vaccine crowd. So different hashtags with broader appeal — #TCOT (top conservatives on Twitter), #2A (Second Amendment) and even #blm (Black Lives Matter) — were included in tweets. The tactic paid off. According to an analysis by [Renee] DiResta and Gilad Lotan, a data scientist, there had not been much overlap between what they call “Tea Party conservative” and “antivax” Twitter before 2015. But around this time, a new space emerged between the two realms, a domain they labeled “vaccine choice” Twitter. Its participants were obsessed with the ideas of freedom and government overreach.

These online groups, quite small in number, proved to be very adept at leveraging the viral potential of social media to make themselves seem large. Although surveys have repeatedly indicated that the great majority of parents support vaccination, these activists fostered, DiResta says, “a perception among the public that everyone was opposed to this policy.” To her dismay, some California Republican politicians adopted this new rhetoric of “parental choice,” despite the fact that SB277 had several Republican co-sponsors. They seemed to have sensed a wedge issue, she says, “an opportunity to differentiate themselves from Democrats,” who held a majority in the Legislature. “It was pure cynicism.” Many of their own children were vaccinated, she points out. But the rhetoric galvanized people in a way that previous anti-vaccine messaging hadn’t.

...

With Donald Trump’s arrival on the national political scene, the politicization of vaccines that was happening in California accelerated in the national arena. Figures like Wakefield and Kennedy reached new levels of visibility: Wakefield attended Trump’s inaugural ball, where he called for a “shake-up” of the C.D.C. — he has refused to divulge who invited him to the event — and Kennedy told The Washington Post that the president was considering appointing him to lead a commission on vaccine safety. Trump himself had already thrown fuel on the anti-vaccine fire. While campaigning for president, he repeated the by-then thoroughly debunked claim that vaccines cause autism. “That took this fringe issue,” David Broniatowski says, “and made it a political issue associated with the parties.”

Suicidal Ideation

In The Politics of Autism, I write:

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.

At Autism,  Paige E Cervantes, Derek S Brown, and Sarah M Horwitz have an article titled "Suicidal ideation and intentional self-inflicted injury in autism spectrum disorder and intellectual disability: An examination of trends in youth emergency department visits in the United States from 2006 to 2014."  The lay abstract:

Youth suicide is a major problem in the United States and globally, but little is known about suicide risk in autistic youth and youth with intellectual disability specifically. Using data from the National Emergency Department Sample, which is the largest database of emergency department visits in the United States, we found that emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis were more common in autistic youth and youth with intellectual disability than in youth without these diagnoses (i.e. the comparison group). This was true when examining both suicidal ideation diagnoses and intentional self-inflicted injury diagnoses at emergency department visits. In addition, the number of emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis increased more from 2006 to 2014 in autistic youth and youth with intellectual disability compared with the comparison group. We also found both similarities and differences when examining factors, such as age, sex, and co-occurring mental health conditions, related to emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis across groups that may be helpful for understanding suicide risk. It is urgent that we improve our understanding, assessment, and treatment of suicidality and self-harm in these groups through more research and clinical efforts.

Sources of Autism Research Funding

 In The Politics of Autism, I discuss the Inter-Agency Autism Coordinating Committee and research priorities.

Portfolio Analysis Report IACC Autism Spectrum Disorder Research 2017-2018

(IACC published the data last year.)

The federal government provides most of the research funding:

Most of the federal money comes from NIH:

The Army is one of these sources:

The Office of the Congressionally Directed Medical Research Programs (CDMRP) was created in 1992 from a powerful grassroots effort led by the breast cancer advocacy community that resulted in a Congressional appropriation of funds for breast cancer research. This initiated a unique partnership among the public, Congress, and the military. Since that time, Congress has added additional research programs and topics. Funds for the CDMRP are added to the Department of Defense (DoD) budget, in which support for individual programs such as the Autism Research Program (ARP) is allocated via specific guidance from Congress. Since its inception in fiscal year 2007 (FY07) and on through FY20, appropriations totaling $104.4 Million have been directed to the ARP by the Peer-Reviewed Autism Research Congressional appropriation.

Why the Army?

Strategies to Leverage Research Funding Guiding DOD's Peer Reviewed Medical Research Program Institute of Medicine (US) Committee on Alternative Funding Strategies for DOD's Peer Reviewed Medical Research Programs; Editors: Michael McGeary and Kathi E. Hanna

CDMRP was initiated in 1992 in response to several forces. One was the emergence of women's health as an urgent public policy issue. In July 1991, for example, the New England Journal of Medicine published several studies showing that there was sex bias in the management of coronary heart disease. In addition, the National Institutes of Health (NIH) had recently launched a women's health initiative and was requiring the inclusion of women in clinical trials.






...

One attractive source of funding at that time was DOD, which had approximately $29 billion in unobligated funds from prior years for the development of weapons systems planned before collapse of the Soviet Union in 1991.1 Those funds were put off limits by the Budget Enforcement Act of 1990, which established “firewalls” between the budgets for defense, foreign affairs, and domestic programs and imposed strict caps on funding increases in each of the three categories. A number of attempts were made to breach the firewalls by transferring defense funding to domestic programs, including two attempts in September 1992 that would have increased funding for breast cancer research specifically, but they all failed.2 Ultimately, Senator Tom Harkin put forward an amendment to the FY 1993 defense budget to increase funding for breast cancer research within DOD (rather than at NIH) by $185 million, to bring the total breast cancer research program within DOD to $210 million (Watson, 1992). As a transfer within DOD's research and development (R&D) budget, the amendment did not violate the budget agreement's firewalls. The funds were to be taken from the Strategic Defense Initiative and thus would be above and beyond the battlefield medicine-oriented core program of the U.S. Army Medical Research and Materiel Command (USAMRMC),3 which was funded at $410 million in the Senate bill. The “Harkin Amendment for Breast Cancer” which passed in the Senate by a vote of 89 to 4, also stipulated that all projects funded by the resulting Breast Cancer Research Program (BCRP) would have to undergo peer review (Mervis, 1993).

.

Yuh-Line Niou

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."  Previous posts have discussed autistic officeholders and political candidates in New York, Georgia, Texas, and Wisconsin.

Andrew Stanton at Newsweek: 

New York Assemblymember Yuh-Line Niou could make history as the first openly autistic member of Congress.

Niou, a progressive Democrat who has represented parts of Lower Manhattan since 2017, announced her run for New York's 10th Congressional District on Saturday in what could become a historic run for office. She has previously been open about being on the autism spectrum and is one of a handful of autistic state legislators across the U.S.

Should Niou win the election, she would become the first openly autistic member of Congress and the highest ranking openly autistic official in United States history. Historians have speculated that some historical politicians may have been on the autism spectrum, but none have had official diagnoses.

...

She will face off against several high-profile New York politicians including former Mayor Bill de Blasio and Representative Mondaire Jones, who currently represents suburbs north of the city. The district is deeply Democratic, so whoever wins the primary in August will be the overwhelming favorite to win the general election in November.

Niou announced her candidacy in the 10th District only hours after the map was released on Friday. A previous iteration of the congressional map was struck down by the court.

The historical nature of her candidacy did not go unnoticed on social media following her announcement. "Folks, she's running. V excited for the possibility of the first openly autistic Member of Congress," wrote journalist Sara Luterman.

SSI WTF

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

A May 3 release from Senator Rob Portman:

Today, U.S. Senators Rob Portman (R-OH) and Sherrod Brown (D-OH) announced the introduction of the Savings Penalty Elimination Act to update the asset limits for Supplemental Security Income (SSI) beneficiaries, which would enable beneficiaries to have more savings in case of an emergency without affecting their benefits. The senators’ bill, the first significant bipartisan legislation in decades, would bring the SSI program into the 21st Century and ensure disabled and elderly Ohioans are able to live with dignity.

An often-forgotten part of America's Social Security system, SSI is a federal program that provides vital income assistance to nearly eight million elderly and disabled Americans with low-incomes and limited resources, including over one million disabled children. But due to decades of shameful federal neglect, the program now consigns millions to deep and enduring poverty, when it should instead offer a lifeline out of it.

“Rising costs and inflation is hurting all Americans, but especially our nation’s seniors and those with disabilities. Yet the Supplemental Security Income program that serves these vulnerable populations hasn’t been updated in decades and punishes them for trying to save responsibly,” said Senator Portman. “I am pleased to introduce this legislation with Senator Brown to update SSI’s restrictive asset limits and better meet the needs of vulnerable seniors and Ohioans with disabilities.”

“We shouldn’t be punishing seniors and Ohioans with disabilities who do the right thing and save money for emergencies by taking away the money they rely on to live,” said Senator Brown. “SSI’s arbitrary and outdated rules make no sense. Our bipartisan bill would update the old rules for the first time in decades and allow beneficiaries to save for emergencies without putting the benefits they rely on to live at risk.”

JPMorgan Chase & Co. recently published a study that suggests that current asset and income limits on federal benefits for people with disabilities create barriers to labor force participation and accumulating savings. Per the study, updating asset limits for SSI, as the senators’ Savings Penalty Elimination Act would do, would “expand economic opportunity and mobility for people with disabilities.”

“JPMorgan Chase is proudly a leading employer for people with disabilities, but outdated asset and income limits on federal benefits for this community create barriers to employment and career advancement, and restrict saving for education, retirement or unexpected expenses for these families. Updating and simplifying the asset and income limits for Supplemental Security Income (SSI) will help expand economic opportunity and mobility for people with disabilities while advancing a more inclusive workforce,” said Jim Sinocchi, Managing Director, Office of Disability Inclusion, JPMorgan Chase & Co.

The current SSI program hasn’t been updated since the 1980s, and punishes these Americans for working, saving for the future, and getting married. Right now, individuals getting SSI are limited to $2,000 in assets; for married couples it’s $3,000. The average current monthly benefit is $585 for individuals. For approximately 60 percent of recipients, SSI is their only source of income.

“People with disabilities across Ohio rely on SSI for access to Medicaid and to help them pay their everyday expenses. But outdated SSI rules prevent people from saving — trapping them in poverty. For the first time in decades, this bipartisan legislation would make long-needed reforms to SSI and ensure that people with disabilities can save more for emergencies and have a little bit more breathing room,” said Gary Tonks, President, CEO, The Arc of Ohio.

“SSI is nothing short of a lifeline for nearly eight million of the nation’s poorest seniors and disabled people. But because SSI has been left to wither on the vine for nearly 40 years, woefully outdated program rules now consign older and disabled beneficiaries to deep and enduring poverty, despite the fact that the program was intended to provide a pathway out,” said Rebecca Vallas, a senior fellow at The Century Foundation who leads the organization’s Disability Economic Justice Team. “By updating SSI’s asset limits for inflation for the first time since 1989, this historic bipartisan legislation represents a major step forward for SSI’s long-forgotten beneficiaries. Congress should act swiftly to pass this important legislation so that disabled and older Americans are no longer barred from saving and planning for the future.”

“It is long-past time for Congress to once again update SSI’s asset limits, which have become overly restrictive and prevent the accumulation of even modest personal savings,” said Bill Sweeney, Senior Vice President at AARP.

The senators’ Savings Penalty Elimination Act would:Update the asset limits for SSI beneficiaries, enabling them to have more savings in case of an emergency without affecting their benefits.
The bill will amend those caps, which have not been changed since 1984, to $10,000 and $20,000, respectively, and index them to inflation moving forward.
•   

Vaccines and Social Amplification of Risk

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

At Risk Analysis, Heidi J. Larson, Leesa Lin, and Rob Goble have an article titled "Vaccines and the social amplification of risk." The abstract:

In 2019, the World Health Organization (WHO) named “Vaccine Hesitancy” one of the top 10 threats to global health. Shortly afterward, the COVID-19 pandemic emerged as the world's predominant health concern. COVID-19 vaccines of several types have been developed, tested, and partially deployed with remarkable speed; vaccines are now the primary control measure and hope for a return to normalcy. However, hesitancy concerning these vaccines, along with resistance to masking and other control measures, remains a substantial obstacle. The previous waves of vaccine hesitancy that led to the WHO threat designation, together with recent COVID-19 experience, provide a window for viewing new forms of social amplification of risk (SAR). Not surprisingly, vaccines provide fertile ground for questions, anxieties, concerns, and rumors. These appear in new globalized hyperconnected communications landscapes and in the context of complex human (social, economic, and political) systems that exhibit evolving concerns about vaccines and authorities. We look at drivers, impacts, and implications for vaccine initiatives in several recent historical examples and in the current efforts with COVID-19 vaccination. Findings and insights were drawn from the Vaccine Confidence Project's decade long monitoring of media and social media and its related research efforts. The trends in vaccine confidence and resistance have implications for updating the social amplification of risk framework (SARF); in turn, SARF has practical implications for guiding efforts to alleviate vaccine hesitancy and to mitigate harms from intentional and unintentional vaccine scares.

From the article:

The initial appearance of the Wakefield report linking the MMR vaccine with autism can serve as an illustration of such an application:

Stage 1: Triggering event: a research article is published in Lancet (Wakefield et al., 1998), suggesting a link between the MMR vaccine to the development of autism: stories followed in various news media, popular magazines, tv shows, professional journals, and official recommendations: these describe in various ways the study, the vaccine, its expected efficacy, the possible side effects, with particular focus on the possibility of autism, the nature of autism and what is known and not known, the prevalence and nature of measles, mumps, and rubella, and the trustworthiness of information about entities recommending the vaccine; multiple conversations occurred among individuals and groups in an effort to interpret this barrage of information; perceptions form about the risks of the vaccine and perceptions of the risk of the disease are adjusted; and perceptions on various related issues, including other vaccines and the institutions that manufacture, regulate, and recommend vaccines are reconsidered.

Stage 2: Based on their recently formed perceptions, individuals choose to respond by following or not following recommendations to have their children vaccinated. They may also choose to engage in further communication about the possible issues or even to join groups concerned to promote or debunk the claims. Feedback from these responses may encourage further communication about the study. Institutions consider whether to respond with further studies or with recommendations to the public.

Stage 3: The choices to vaccinate or not directly affect the risks that the children experience from the diseases the vaccine aimed to prevent. Other choices may be about other health decisions—for example due to loss of trust—and provoke risks of other types.

Feedback: Parents who already had anxieties about autism as well as some parents with autistic children embraced the findings as it gave an explanation for the seemingly growing phenomena of autism. Some organized groups and individuals communicated messages against the MMR vaccine, while others joined campaigns to debunk the proposed autism link and promote the MMR vaccine. Health institutions responded with their own communication efforts; these were intensified as further studies contradicted Wakefield's and his article was retracted by Lancet (Taylor et al., 2014).

People with Disabilities in the Federal Workforce

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. Employment remains a challenge.

A release from EEOC:

In a newly issued report, the U.S. Equal Employment Opportunity Commission (EEOC) shows that opportunities for persons with disabilities in the federal workforce are improving, but that further progress is needed on retention and representation in leadership positions.

The study examined federal workers with disabilities’ demographics, their hiring, advancement, and separation from employment at federal agencies, discrimination complaints based on disability, and ways that federal agencies are improving accessibility for persons with disabilities.

Representing 9.4% of federal employees, the participation by people with disabilities in the federal workforce is increasing. In FY 2014, persons with disabilities represented 8.68% of federal workers. This increased by more than 8% to 9.42% in 2018. Accordingly, federal agencies are raising awareness of accessibility for persons with disabilities and are improving their technological resources to make their workplaces more accessible to people with disabilities.

The study also found that persons with disabilities are promoted at a rate similar to what would be expected based on their governmentwide participation rate.

“The EEOC is delighted to see that our support of people with disabilities has borne fruit in so many ways,” said Carlton Hadden, director of the EEOC’s Office of Federal Operations. “Clearly, though, more progress is needed. The EEOC will continue to work to advance the opportunities and well-being for this still too underutilized and underappreciated segment of our population.”

The report other findings include the fact that persons with disabilities are still underrepresented in federal sector leadership. Among persons with targeted disabilities, 10.7% are in leadership positions and 89.3% are in non-leadership positions. Among persons without disabilities, 16.4% are in leadership positions, and 85.6% are in non-leadership positions.

Targeted disabilities are the most severe ones, including blindness, deafness, partial and full paralysis, missing extremities, dwarfism, epilepsy, intellectual disabilities, and psychiatric disabilities. Individuals with these disabilities typically have the greatest difficulty finding employment. As a matter of policy, the federal government has a special emphasis on recruiting, hiring, and retaining people with targeted disabilities.

Further, the report illustrates that people with targeted disabilities involuntarily left federal employers at more than twice the rate of people without disabilities, and people with any disability were 53% more likely to involuntarily leave than persons without disabilities. Similarly, persons with disabilities and targeted disabilities were more likely to voluntarily leave federal employers than persons without disabilities.

“There’s something wrong with this picture when so many more people with disabilities leave the government than those without,” Hadden said. “Our government needs to be the best workplace it can be for everyone. Federal managers and policymakers need to take a good look at this situation and figure out ways to improve this picture.”

The report also reveals that over a five-year period, federal sector physical disability-based complaints increased by 22% and mental disability-based complaints increased by 72%, outpacing the overall increase in federal sector EEO complaints. This may be due to increased discrimination against persons with disabilities or increased comfort with filing an EEO complaint among persons with disabilities, the report said.

By using 2018 data, this report provides a baseline to measure the impact of EEOC’s final rule, “Affirmative Action for Individuals With Disabilities in the Federal Government,” which clarified that federal employers must take proactive steps to improve opportunities for persons with disabilities.

For more information on disability discrimination, please visit https://www.eeoc.gov/disability-discrimination.

Dental Care

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

Kristen Hwang at CalMatters:

A typical dental office cannot perform general anesthesia nor can it accommodate other disabilities requiring wheelchair lifts or other specialized equipment.

Instead, disabled patients languish on waiting lists for years at the few places that can see them — usually dental schools. When they get an appointment, it’s frequently a financial hardship requiring time off of work for caregivers, long drives from remote areas of the state, overnight hotel stays and out-of-pocket surgical fees.
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Without a centralized database, the number of patients that need special dental care is hard to quantify. Approximately 1.3 million children, or 15% of all children, in the state have chronic physical, developmental or behavioral conditions — although of course not all of those require special dentistry. The Department of Developmental Services also serves an estimated 330,000 individuals with disabilities. And California’s growing aging population includes 690,000 seniors with Alzheimer’s disease.

But, according to the dental association, there are only 14 dental schools and surgery centers that can handle these special needs patients. Some hospitals give dentists admitting privileges to perform surgery, but they say it’s often difficult to book operating time.

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One of the primary reasons it’s so difficult to find a dentist is that most don’t accept Medi-Cal, the state health plan for its poorest residents, which a majority of people with disabilities rely on. In 2021, about 36% of active licensed dentists in the state accepted Medi-Cal. That number has grown by about 10% since 2017, when the state increased reimbursement rates. However, the number of Medi-Cal enrollees has also grown, reaching 14 million in the past two years.

Ben's Blue Bags

In The Politics of Autism, I discuss interactions between first responders and autistic people. 

From Prince William Living:

The Occoquan-Woodbridge-Lorton Volunteer Fire Department (OWL VFD) has become the first fire department that also provides emergency medical services (EMS) on the east coast, and in the state of Virginia, to carry Ben’s Blue Bags. The bags are kits with assorted sensory items that can be used while treating patients with Autism Spectrum Disorder (ASD) or family members of people with autism.

The idea to begin carrying these unique resources has been discussed by members in the past few years. Recently, OWL VFD EMT Brooke Smith and Prince William County Department Fire and Rescue System (PWC FRS) Firefighter/EMT, Anthony Saville, who is assigned to station 2, mentioned the idea to OWL VFD’s leadership. After hearing the presentation, OWL VFD Life Member and former Rescue Chief, Ed Craig shared information about Ben’s Blue Bags, a nonprofit organization based in Indiana. Craig had seen the product a few years ago in a Facebook post.

Ben’s Blue Bags was created by Firefighter/Paramedic Lt. Matt Kodicek from the City of Crown Point Fire Rescue in Crown Point, IN. He was inspired to start the nonprofit in honor of his son, Ben, who is autistic....
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The sensory bags contain an array of different items to use when patients are having a stressful sensory issue. Marbles in mesh, squeeze balls, a flipper chain, and a Rubik’s Cube is among the sensory tools in the kits.

The items take into consideration the various forms of ASD; nonverbal, hyposensitivity, and hypersensitivity. The noise reduction earmuffs in the kits can be used for autistic people who are sensitive to sound, while the dry erase markers and a whiteboard with pictures can be used to help first responders communicate with non-verbal individuals. The bags are not just for children, they also can help adults going through a stressful event.

For more information about Ben’s Blue Bags visit their Facebook page, www.facebook.com/bensbluebags

Algorithms and Hiring

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

From the Department of Justice:

This guidance explains how algorithms and artificial intelligence can lead to disability discrimination in hiring. The Department of Justice enforces disability discrimination laws with respect to state and local government employers. The Equal Employment Opportunity Commission (EEOC) enforces disability discrimination laws with respect to employers in the private sector and the federal government. The obligation to avoid disability discrimination in employment applies to both public and private employers.

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The ADA bars discrimination against people with many different types of disabilities.

Some examples of conditions that may be disabilities include: diabetes, cerebral palsy, deafness, blindness, epilepsy, mobility disabilities, intellectual disabilities, autism, and mental health disabilities. A disability will affect each person differently.

When designing or choosing hiring technologies, employers must consider how their tools could impact different disabilities.

For example, a state transportation agency that designs its hiring technology to avoid discriminating against blind applicants may still violate the ADA if its technology discriminates against applicants with autism or epilepsy

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Employers should examine hiring technologies before use, and regularly when in use, to assess whether they screen out individuals with disabilities who can perform the essential functions of the job with or without required reasonable accommodations.

For example, if a county government uses facial and voice analysis technologies to evaluate applicants’ skills and abilities, people with disabilities like autism or speech impairments may be screened out, even if they are qualified for the job.

TikTok and ASD

 In The Politics of Autism, I examine the role of social media in the development of the issue.  

Katie Camero at Buzzfeed:

Before TikTok, many autistic creators said they had no way to connect with other autistic people. Over time, the platform has introduced them to people who understand them and their needs.

“Ever since I started talking about autism in my videos, I’ve met some very incredible and nice autistic people who are very talented and wise and who have become some of my greatest friends,” said Timothy Boykin, 23, whose TikTok account has 90.8K followers.

With the goal of connecting and uplifting BIPOC autistic creators, Jackson-Carpenter formed a group chat with some of his new, close TikTok friends. One of them inspired him to rekindle his passion for Pokémon, one of his special interests.

While neurotypical people may not find online friendships fulfilling, autistic people may actually prefer those kinds of relationships, Mazurek said, because they don’t involve in-person stressors, like having to read social cues or dealing with strong sensory stimuli.

A 2017 study found that using Facebook was associated with higher-quality friendships among autistic teens but not among their non-autistic peers. The Yale researchers suggested autistic people “socially compensate through online interaction” because of their “unique communicative style, rather than for being socially anxious.”

“Before TikTok, it was a lot of isolation because there wasn’t a place where I can be honest about things that I’m struggling with,” David said, particularly spaces for autistic women and girls and adults who were diagnosed later in life.

Now, one of David’s goals as a creator is to fill those gaps by posting content that explores what late-diagnosed adults can do to make their lives a bit easier. “How do you be a person with autism? How do you advocate for yourself when this is a very new thing to you? That has been my goal since I started,” David said. “Even if my content helps one person, that’s enough for me.”