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Tuesday, May 24, 2022

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.


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.

Monday, May 23, 2022

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).


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Sunday, May 22, 2022

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 YorkGeorgiaTexas, 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.

Saturday, May 21, 2022

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.
  •   

Friday, May 20, 2022

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).


Thursday, May 19, 2022

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.

Wednesday, May 18, 2022

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.
...
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.
...
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.

Tuesday, May 17, 2022

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....
...

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

Monday, May 16, 2022

Algorithms and Hiring

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

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.
...
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

....

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.

Sunday, May 15, 2022

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.”

Saturday, May 14, 2022

Autism Family Caregivers Act

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

A release from Senator Bob Menendez (D-NJ):

U.S. Senators Bob Menendez (D-N.J.) and Susan Collins (R-Maine) today introduced bipartisan, bicameral legislation that would provide autism families the support and training needed to provide quality caregiving to their children.

“Throughout my entire career, I have fought to ensure autistic individuals have the resources to live full and productive lives,” said Sen. Menendez. “I’m proud to lead this bipartisan bill that will deliver real results for children living with autism, their families, and caregivers. This is about dignity and compassion. And most of all, it’s about recognizing that we need to do more to help everyone reach their highest potential by providing the resources needed support that goal.”

“Millions of American families devote enormous time and attention to care for a loved one with autism and to ensure they have the same opportunities as their peers,” said Sen. Collins. “Our bipartisan legislation would support the efforts of these selfless caregivers to improve the wellbeing of children with autism. By providing families with the tools and resources they need to succeed, we can ensure that all children have the ability to reach their full potential and lead rich, fulfilling lives.”

New Jersey has the highest rate of autism, with one in 35 children identified with ASD. One in 44, 8-year-olds nationwide have ASD, according to the CDC.

The Autism Family Caregivers Act would establish a five-year caregiver skills pilot program to award grants to nonprofits, community health centers or hospitals to provide skills training to family caregivers of children with autism. The training will teach family caregivers how to use every day routines and home activities to improve the mental and physical well-being of such children and their caregivers. Caregivers will be trained to address communication skills, daily living skills, social engagement and behavior management. The grants will provide for 25 pilot programs in at least 15 states.

The National Association of Community Health Centers, New Jersey Hospital Association, American Academy of Pediatrics, Autism Society, The Arc and Autism Speaks support the senators’ legislation.

...

Congresswoman Grace Meng (D-N.Y.-06) is the lead sponsor of the bill in the House.

Sen. Menendez is the leading champion in Congress for individuals living with autism and their families. The Senator’s Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act of 2019 was passed and signed into law. The bipartisan bill, which builds upon the 2014 Menendez-authored law, shapes federal autism policy and investment in research, early detection, and research to develop new treatments and therapies for those with ASD and other developmental disabilities. The 2019 law also considers the needs of individuals with ASD well into adulthood and “across [their] lifetime.” The Senator was also one of the original authors of the Autism CARES Act of 2006.

Friday, May 13, 2022

Federal Policy on ASD

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
 
Highlights
  • Public policies shape the practical realities of those affected by autism.
  • Socially constructed understandings of autism are embedded in policies.
  • Federal ASD-specific policies reinforce ASD as a largely medicalized construct
  • Initial ASD policies framed children with ASD as “worthy” of recognition.
  • Later ASD polies conferred material resources on medical research and surveillance.
Abstract
Public policies play an influential role in shaping public opinion about health conditions, who is affected by them, and potential pathways for identification and intervention. This study draws upon a social constructionist perspective of policy design and disability to examine how autism spectrum disorder (ASD) has been framed in United States federal legislation. Qualitative content analysis of autism legislation passed between 1973 and 2019 indicates that policies reinforced ASD as a largely medicalized, neurobiological condition of childhood; this was reflected in both the policy aims, sources of knowledge and groups prioritized to address ASD; and the symbolic or material resources committed (or not committed) by enacted federal legislation to specific constituencies. Policy aims of early ASD legislation were symbolic in nature, focusing predominantly on framing children with ASD as a group worthy of public recognition. More recent legislation, in contrast, conferred material resources – albeit in targeted ways. Funding for surveillance and medical research on causation, early detection, treatment, and health professional training were prioritized with little attention to either service delivery needs of individuals with ASD and their families, supports over the lifecourse, or the social factors influencing ASD.

From the article:

Enacted federal legislation also pays little attention to addressing the “service cliff” individuals with ASD can face in early adulthood (Cheak-Zamora et al., 2014; Volkmar et al., 2017) or subsequent needs that may arise throughout one's lifecourse (Chan and Leung, 2021; Gillespie-Lynch et al., 2021). More than hortatory attention to adults did not appear until CARES 2014 and it remained limited. For example, despite surveillance of ASD in adulthood being added into recent policies such as CARES 2014 and 2019, population-based estimates (state and national) do not exist due to the paucity of surveillance programs funded for this purpose (Dietz et al., 2020).

Lack of attention to adults with ASD and caregivers in the allocations that are supported by federal ASD policy might stem in part from the issue context around ASD originally being established and dominated by pediatricians (Happé and Frith, 2020). Ensuing legislation and awareness campaigns revolved around children, despite decades of evidence suggesting that ASD characteristics can persist over the lifespan (Howlin and Magiati, 2017; Nicolaidis et al., 2014). The dominant frame of ASD as a childhood disorder may also reflect differences in societal views about who is deemed worthy of policy intervention, as well as different processes of social monitoring and control that vary over the lifecourse (Collins and Mead, 2020). Children's perceived deservingness may dissipate with age, underscoring the variability of group constructions and power over time (Collins and Mead, 2020). The dominant framing could ultimately send the message that ASD is not a lifespan issue, undermining the challenges many adults and their caregivers report facing.

 

Thursday, May 12, 2022

Trump Fueled Antivax and Anti-Science Attitudes

 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.  

UnfortunatelyRepublican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.  Trump bears much of the blame. There is a great deal of overlap between MAGA World and the antivax movement.

In a 2021 paper published in American Political Science Review, political scientists David C. Barker, Ryan Detamble and Morgan Marietta looked at Republicans’ growing distrust of scientists and other experts. Their research shows that partly due to the education divide — i.e., college graduates prefer the Democratic Party, and white people without a college degree prefer the Republican Party — the divide between those who are pro-intellectualism and those who are anti-intellectualism is more entrenched in party politics.

Importantly, Barker and his colleagues defined anti-intellectualism not as a respondent's ability or personal level of education. Instead, it was about respondents having positive feelings about trusting one’s gut and having negative feelings toward experts, schools and “the book-smarts of intellectuals.” In their paper, the researchers wrote that those who distrust scientists and other official sources of authority “distinguish those who are ‘book smart’ from those who have common sense, the latter of which they view as a superior means of ascertaining truth.”

They found that people with this attitude were more likely to align with the Republican Party. Which makes sense. Trump has promoted the vaccine-autism myth and falsely claimed that climate change is a hoax. Trump’s anti-intellectualism surely attracted voters who already shared these beliefs, but he also might have influenced other people to take up such beliefs. According to one study, he was the primary spreader of COVID-19 misinformation.

These partisan trends existed before Trump’s presidency, of course, but Barker and his colleagues wrote that they spiked during his tenure. And instead of receding once Trump left the national stage, the partisan realignment seems to be firmer than ever.

From the NewsHour:

William Brangham:

The University of Miami's Joseph Uscinski studies conspiracy theories. He argues the partisan divide over COVID vaccines is also because of the type of Republican that was drawn to Donald Trump.

Joseph Uscinski:

President Trump built a coalition of conspiracy-minded people, and he was doing that with conspiratorial rhetoric. But he even engaged in misinformation about vaccines, claiming on Twitter at one point, long before he ran for president, that vaccines caused autism.

Bill O'Reilly, Former Host, "The O'Reilly Factor": Both the president and I are vaxxed.

And did you get the booster?

Donald Trump, Former President of the United States: Yes.

Bill O’Reilly:

I got it too. OK, so…

(BOOING)

Donald Trump:

Don't. Don't. Don't. Don't. Don't.

Joseph Uscinski:

And when he makes efforts now to say that he got the shot and people should get it, he gets booed by his own crowd, because these are the people that he sought to bring around him. So, their mind just isn't going to change at this point just because he says to go get it.

 

Wednesday, May 11, 2022

Waiting in Florida


In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  In many states -- particularly those with large rural populations -- one problem is a shortage of high-quality behavior therapists.

 Rose Wong at The Tampa Bay Times:

The wait times for undergoing a diagnosis screening and starting therapy in Florida can range from 8 to 24 months, according to Elemy, a national autism therapy provider. Insurance companies require an official diagnosis before they’ll pay for applied behavior analysis, the most common type of autism therapy.

The average wait time for an autism screening at All Children’s Hospital is six months, but can take longer if the child is older or needing to be re-evaluated, Gardner said.

The COVID-19 pandemic aggravated wait times, forcing providers to shut down in-person services and delaying patient appointments as they transitioned to telehealth appointments.

Long wait times are exacerbated by a lack of providers diagnosing and treating autism in Florida, said Alicia Anthony-Zabala, co-owner of Missing Piece ABA, a Tampa Bay company that offers applied behavior analysis therapy to children on the spectrum.

The treatment — applied behavioral analysis — involves teaching new behavioral and language skills through positive reinforcement. Providers may challenge children to have a conversation about different colors or sit still for a length of time, Anthony-Zabala said. Then they’ll reward desired behavior with a matchbox car or time playing on an iPad.

She said low pay has pushed many providers out of the industry and kept others from joining it.

The average annual salary in Florida for registered behavioral technicians is $34,436, according to ZipRecruiter. That is nearly $7,000 less than the national average, and $2,000 below the state’s living wage for a single adult with no children, according to the Massachusetts Institute of Technology’s Living Wage Calculator.



Tuesday, May 10, 2022

Disenfranching People with Disabilities

 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."

Barbara Sprunt at NPR:
Nationally, the 2020 election saw a big uptick in voters with disabilities casting ballots, as many states took steps to ease access amid the coronavirus pandemic.

The share of people with disabilities who reported having a problem voting dropped from 26.1% in 2012 to 11.4% in 2020, according to a study from Rutgers University.

But now, many voters with disabilities are warily following efforts across the country by Republican-led states to tighten voting rules following the 2020 election, in what conservatives say are steps to shore up election integrity.

In Wisconsin, the crux of the legal case over drop boxes and returning ballots is the interpretation of a portion of state law that details the absentee ballot return process.

"The envelope shall be mailed by the elector, or delivered in person, to the municipal clerk issuing the ballot or ballots," the statute reads.

Rick Esenberg, president of the conservative Wisconsin Institute for Law and Liberty, which represented the plaintiffs in the original lawsuit, says the law is explicit.

"I think [the court] ought to read the law as it is written, and say that the law means what it says," he says.

But many voters with disabilities — along with others who live in congregate settings, like those incarcerated or in nursing homes — say a strict interpretation of the law leaves them behind.

"I do feel like I'm being punished just because I'm physically not able to put a ballot in a mailbox," says Stacy Ellingen, a regular absentee voter in Oshkosh.

She has athetoid cerebral palsy and uses an app on her phone that takes her typed text and speaks her words aloud.

"My caregivers help me fill out the ballot and put it in the mailbox. It's literally the only way for me to vote," she says. "If this stands, I wouldn't be able to vote for the people actually making the decisions that affect my life."

Sunday, May 8, 2022

Alcohol

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their familiesHealth problems are prominent among them.

Emily Rothman and colleagues have an Autism article titled "Reasons for alcohol use and non-use by underage U.S. autistic youth: A qualitative study." Abstract:

This study describes the views and experiences of autistic youth about alcohol, including reasons for use and nonuse. We conducted 40 semi-structured interviews with autistic youth aged 16–20 years old. Of these, 20 had consumed alcohol in the past year. We used an inductive content-based analysis approach. Youth were deliberate about their choices to use, or abstain from, alcohol. Some conducted their own background research on the effects of alcohol, while others took a very measured approach to drinking and paced their alcohol consumption during drinking episodes with care. Reasons not to drink included fear of developing alcohol addiction, not liking the taste of alcohol, concern about alcohol interacting with prescribed medications, as well as the desire to avoid hangover, disinhibition, or other negative effects. On the contrary, youth had some positive alcohol expectancies: non-autistic people are more accepting when drinking, alcohol helps autistic people cope with problems, irritability, boredom, and sensory processing challenges, and helps them fit in. Results reveal that alcohol use disorder in autistic adults could have its roots in underage experiences that provide temporary relief from social anxiety, feeling socially isolated, and challenges with sensory processing. The development of evidence-based youth alcohol prevention strategies for autistic youth may be an important next step.



Saturday, May 7, 2022

Regs Threaten Charter Schools

In The Politics of Autism, I discuss the issue's role in presidential campaigns. President Biden supports labor unions and people with disabilities. The interests of the two groups do not necessarily coincide.

Naomi Schaefer Riley at WSJ:
Ann Wiesner’s daughter struggled in school until she was admitted to Lionsgate Academy, a Minnetonka, Minn.-based charter school that specializes in serving children on the autism spectrum in grades 7 through 12. Now, the girl “thinks about the future,” her mother says. “She talks about getting a job and living on her own.” If regulators in Washington have their way, other children will be denied that opportunity.

At her 900-student elementary school, even with a paraprofessional by her side, “she got into conflicts in the hallway, shoving matches with other kids who were sitting in what she thought was her seat,” says Ms. Wiesner, who for privacy reasons asked me not to use the girl’s name. Lionsgate has smaller classes, a calmer environment and a staff that understands autistic kids. Though they are paid less on average than teachers at area public schools, the Lionsgate teachers aren’t burdened with piles of paperwork and can devote their time to teaching.

The Wiesners and hundreds of other families might not have gotten the opportunity to attend Lionsgate without grants from the Charter School Program, a federal fund that supports new charters and those looking to expand. From 2017-19, Lionsgate received grants totaling more than $500,000 to open a new campus. But new regulations proposed in March by the Education Department would make it much more difficult for schools like Lionsgate to get that support.

The rules, influenced by teachers unions, would require charter operators to submit a “community impact analysis” involving “descriptions of community support and unmet need for the proposed charter school, including information on over-enrollment of existing public schools.” The schools would also have to show that they “would not otherwise increase racial or socio-economic segregation or isolation in the schools from which the students are, or would be, drawn to attend the charter school.”

Yet public-school overenrollment isn’t why Lionsgate opened—or why it has a wait list of more than 200 families. There are seats at regular schools for children like Ms. Wiesner’s daughter—but their special education-programs can’t successfully meet the needs of children with autism.