Workplace Accommodations

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

Wendy Lu at NYT:

The Americans With Disabilities Act, which became law in 1990, bans discrimination against workers with disabilities and requires employers to provide reasonable accommodations that don’t pose an “undue hardship” — a tricky term.
...

“There’s a huge gap between what the law was intended to do and what the experience of employees with disabilities really are,” said Ms. Macfarlane, who is the incoming director of the disability law and policy program at Syracuse University College of Law.

Experts argue that in order to be more accommodating to workers with disabilities, employers need to lift antiquated barriers such as medical documentation requirements and long wait times. Instead, employers should establish policies that are accessible to as many people as possible while being flexible and open to improvements.

...

Despite legal obligations, employers are often hesitant to beef up their accommodations because of misconceptions that they are expensive and rarely needed. The median cost of an accommodation with a one-time expense is around $300, according to a recent survey by the Job Accommodation Network, and about half of employers reported that the accommodations they had established cost nothing. (Many accommodations, like remote work, also benefit nondisabled employees, including parents.)

Underlining the problem, many organizations do not have a standardized accommodation process or a centralized budget for it; often, they wait to address accessibility until an employee makes a request, said Shelby Seier, the founder of All Kinds, a consulting firm that evaluates companies for accessibility.

...

“Have an internal affinity group where you have individuals with disabilities talking with each other,” said Yvette Pegues, 45, the chief diversity officer of Your Invisible Disability Group and a board member for the Arc, a disability advocacy organization.

TikTok Misinformation

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

"The Reach and Accuracy of Information on Autism on TikTok," by Diego Aragon-Guevara,
Grace Castle, Elisabeth Sheridan &Giacomo Vivanti
Journal of Autism and Developmental Disorders (2023) Cite this article

Abstract:

Purpose: Although social media platforms have made information about autism more accessible to the general public, concerns have been raised about the unfiltered nature of the content they host. In the current study, we examined the reach and accuracy of videos providing informational content about autism on TikTok, a popular social media platform. Methods: We examined engagement indicators (including views and “likes”) for the TikTok videos associated with the #Autism hashtag. Two coders independently fact-checked informational content of the most viewed videos from the #Autism hashtag videos and coded it as either accurate, inaccurate or ‘overgeneralization’ based on the consistency of the information in the videos with current knowledge on autism. Results: Videos associated with the “#Autism” hashtag accrued 11.5 billion views collectively. An examination of the top 133 videos providing informational content on autism, which totaled 198.7 million views and 25.2 million likes, showed that 27% of the videos were classified as accurate, while 41% were classified as inaccurate and 32% as overgeneralized. There were no significant differences in engagement between accurate and inaccurate/overgeneralized videos. Videos created by healthcare professionals were more likely to include accurate information. Conclusion: The informational content about autism made available on TikTok reaches a wide number of people. Most of the information provided, however, appears to be misaligned with current knowledge. It is important for healthcare providers and other professionals to be aware of the autism-related content being shared on TikTok so that they can better engage with the large community of TikTok users.

From the article:

Given the reach of TikTok autism content, it is important that stakeholders in the autistic community (including autistic individuals, family members, and professionals interfacing with autism) are aware of the unfiltered nature of information about autism happening on TikTok and other social media. Misinformation about autism, including over generalization and oversimplification, has the potential to pose barriers to trust, communication and shared decisionmaking between professionals and autistic individuals and their families. This can be counteracted or mitigated by an increased awareness of autism-related content spread through TikTok. For example, professionals providing diagnostic or intervention services might benefit from familiarizing themselves with “trending topics” that are widely shared on TikTok, such as the promotion of untested products, or the adoption of an antagonistic stance against diagnostic or intervention protocols, so that constructive conversations about needs and supports for each individual can be established. The disconnect between information produced by scientific research and content shared on TikTok also points to the need for broadening research dissemination efforts so that reliable and fact-checked information can reach a broader audience.

 

Case about ADA Testers

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

From The Arc of the United States (with the Autistic Self-Advocacy Network as one of the amici:

Eighteen leading disability advocacy organizations have filed a “friend-of-the-court” brief in the U.S. Supreme Court in Acheson Hotels v. Laufer, a case that will decide whether testers—disabled people who investigate compliance with the Americans with Disabilities Act (ADA)—have the ability to sue businesses for discrimination when their rights under that law are violated. The case is scheduled to be heard on October 4, 2023.

Civil rights testing—intentionally investigating and challenging discrimination—has been used as an effective tool of enforcement since the 1950s, helping ensure that public accommodations were integrated and housing discrimination, challenged. Congress included the same enforcement tools when it passed the ADA in 1990 that it had included in these earlier civil rights laws, and testing has proven to be an essential enforcement tool in this context as well.

Deborah Laufer is one such tester. She is a person with disabilities who has filed numerous cases against hotels for violating an ADA regulation that requires hotels to include certain information about accessibility features in their online reservation systems. Ms. Laufer is a “tester” in her cases because she voluntarily puts herself in a situation to experience discrimination—specifically, she visits hotel websites to investigate compliance with the reservation rule—and when denied the information to which the ADA regulations entitle her, she challenges that discrimination in court and seeks to make the hotels comply with the law.

Despite acknowledging that they were, in fact, violating the ADA, hotelier Acheson doesn’t think that tester standing is fair, and argues that people like Ms. Laufer should have an immediate plan to stay at a hotel before they can challenge the hotel’s discrimination. Acheson asks the Supreme Court to reverse a First Circuit opinion upholding discrimination claims brought against them by Ms. Laufer as a tester.

The brief of amici opposes Acheson’s request and defends testing as essential to the enforcement of the ADA, arguing that eliminating tester standing would frustrate the ADA’s goal of equality of opportunity. Amici discuss how the indignity of unequal treatment has long been recognized as the sort of harm that can be remedied in court and explains how an individual’s motive, or status as a tester, does change that. Amici also dispel a number of false claims made by Acheson and its supporters about ADA litigation.

“People with disabilities face rampant inaccessibility and discrimination that impacts every aspect of their lives—from travel to employment to health care and everything in between,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc of the United States. “Despite the ADA’s promise to create equal access, insufficient oversight and enforcement means that businesses frequently ignore the civil rights of disabled people, making their daily lives extremely difficult and undermining the rights guaranteed by the law. ADA testers are essential to ensuring the rights of people with disabilities are enforced and protected and that the full promise of the ADA is realized.”

“If individuals with the fortitude to take on the burden of ADA litigation as testers are stripped of standing, the result will inevitably be less enforcement of the ADA, frustration of its goals, and the continued exclusion of people with disabilities from community life,” said Michelle Uzeta, Deputy Legal Director at the Disability Rights Education and Defense Fund.

“Given that the ADA was signed into law more than 30 years ago and thousands of businesses remain inaccessible to people with disabilities, it is critically important the Supreme Court affirms the ability of testers to investigate compliance,” said Marlene Sallo, Executive Director of the National Disability Rights Network. “Testers ensure that travelers with disabilities do not discover their hotel is inaccessible when they show up at the door.”

“By the time a disabled person attempts to patronize a noncompliant public accommodation, it’s too late for a lawsuit to be much use,” added Amy Robertson, Counsel for Amici at Fox and Robertson, PC. “Systemic investigation by those protected by the ADA can accelerate society’s progress toward a time when they and others can go about their daily lives expecting—and attaining—access to a wide range of facilities and services.”

Amici are represented by attorneys Karla Gilbride, Amy Robertson of Fox & Robertson, PC, Justin Ormand of Allen and Overy LLP, Thomas Zito of Disability Rights Advocates, and Michelle Uzeta of Disability Rights Education and Defense Fund.

Katelynn Richardson at The Daily Caller:

Deborah Laufer, who has targeted over 600 hotel owners and operators with ADA lawsuits, asked the Supreme Court on July 24 to find her case against Acheson Hotels moot because she had dismissed all claims against the business, citing concern that a sanctions order levied against her attorney may “distract” from their merits. In a brief order Thursday, the Supreme Court denied Laufer’s request, writing that the question of mootness would be “subject to further consideration” during oral arguments scheduled for Oct. 4.

 

Autism, Self-Harm, and Co-Occurring Psychiatric Diagnoses

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

Meng-Chuan Lai et al., "Self-Harm Events and Suicide Deaths Among Autistic Individuals in Ontario, Canada," JAMA Netw Open. 2023;6(8):e2327415. doi:10.1001/jamanetworkopen.2023.27415

Key Points

Question What are the sex-stratified rates of self-harm events and suicide death among autistic individuals vs nonautistic individuals and the associated sociodemographic and clinical risk factors?

Findings In this cohort study including 379 630 individuals regarding self-harm findings and 334 690 individuals regarding suicide death findings in Ontario, Canada, autistic females had an 83% increased risk and autistic males had a 47% increased risk of self-harm compared with nonautistic individuals, when accounting for neighborhood income and rurality, intellectual disabilities, and psychiatric diagnoses. The crude hazard ratio showed that autistic females had a 98% increased risk and autistic males had a 34% increased risk of suicide death, but these increases were associated with psychiatric diagnoses.

Meaning This study suggests that psychiatric diagnoses were significantly associated with risks of self-harm and especially suicide among autistic females and males.

Kennedy Family v. RFK Jr.

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. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Peter Baker at NYT:

For years, Mr. Kennedy has made himself into a champion of the vaccine resistance movement, promoting spurious assertions about the dangers of inoculations and once calling the Covid-19 vaccine the “deadliest vaccine ever made.” He has said Anne Frank had more freedom during the Holocaust than Americans pressured to take the vaccine, a comparison for which he later apologized, and wrote a book attacking Dr. Anthony S. Fauci.

...

Last month, he declared that the coronavirus was “targeted to attack Caucasians and Black people” and that “the people who are most immune are Ashkenazi Jews and Chinese.” He later said he was misinterpreted, writing on Twitter that the disparate effect of the virus “serves as a kind of proof of concept for ethnically targeted bioweapons” but “I do not believe and never implied that the ethnic effect was deliberately engineered.”

That proved too much for several family members. Kerry Kennedy, his sister and president of Robert F. Kennedy Human Rights, issued a statement calling his remarks “deplorable and untruthful.” Joseph P. Kennedy II, his brother and a former congressman, called them “morally and factually wrong.” Joseph P. Kennedy III, his nephew and another former congressman now serving as Mr. Biden’s special envoy to Northern Ireland, posted his own response on Twitter: “I unequivocally condemn what he said.”

Not "Either-Or"

In The Politics of Autism, I discuss divisions and factions within the autism community.

To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests.  In autism politics, the factional disagreements are diverse and deep.    Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them.  For people with autism, the issue involves their very identity.  

  Autism politics is like faculty politics on crystal meth.

Is there hope for a truce? Hari Srinivasan at Newsweek:

The heterogeneity of autism calls for a multifaceted approach that combines strengths-based opportunities and challenges-based solutions unique to each individual.

Strengths-based opportunities are what the disability rights movement has always advocated and include education, technology, communication support, and accommodations, which have empowered individuals like myself. Such an approach allowed me access to a college education at prestigious institutes like Berkeley and Vanderbilt.

Challenge-based solutions involve researching physiology, brain biology, gene-environment interactions, biomarkers, precision medicine, sensorimotor supports, and developing long-term supports, treatments, and technologies. Such care also needs to be part of routine care and delivered in mainstream settings for autistics that need these solutions. Neglecting these challenges leads to marginalization and impedes true inclusion and belonging.

Scientists now believe that underlying autoimmune and inflammatory processes may be more common than thought earlier. Perhaps some of our issues are just a simple physiological solution away, which can mean a huge improvement in our quality of life.

To drive true progress and improve the quality of life of all autistics, we must recognize a dual based approach. It does not have to be either-or.

Prenatal Depression and Autism-Related Traits

In The Politics of Autism, I discuss various ideas about what causes the condition.

From NIH Environmental influences on Child Health Outcomes (ECHO) Program:

Children of mothers with prenatal depression had slightly more autism-related traits compared to those without that exposure, according to a study funded by the Environmental influences on Child Health Outcomes (ECHO) Program at the National Institutes of Health.

While this study didn't explore why this association might exist, future research could investigate whether these findings reflect overlap in genetic risk for depression and autism-related traits or another mechanism.

Prior studies linked prenatal depression and depression history to autism spectrum disorder, but this study focused broadly on autism-related traits. By studying social communication and other autism-related traits, researchers can better understand how prenatal depression influences these traits, which may show up in children without an official diagnosis of autism spectrum disorder.

"Autism-related traits can significantly impact a child's physical, social, and psychological development, regardless of their clinical diagnosis. Screening and treating pregnant patients for depression and detecting autism-related traits in these children early on can lead to timely support of healthy development and outcomes for mothers and children," said study author Lyndsay Avalos, PhD, MPH, of Kaiser Permanente Northern California Division of Research.

The analysis included 3,994 parent-child pairs with prenatal depression data and 1,730 pairs with depression severity data from 33 ECHO research sites across the United States. Autism-related traits were assessed using the Social Responsiveness Scale (SRS) for children up to 12 years of age.

Dr. Avalos and Lisa Croen, PhD, also of Kaiser Permanente Northern California Division of Research, led this collaborative research published in Autism Research.

About ECHO: Launched in 2016, the Environmental influences on Child Health Outcomes (ECHO) Program is a research program in the Office of the Director at the NIH with the mission to enhance the health of children for generations to come. ECHO investigators study the effects of a broad range of early environmental influences on child health and development. For more information, visit echochildren.org.

About the NIH: NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information, visit www.nih.gov.

Measles and the Unvaccinated

 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.    Examples include measles, COVID, flu, and polio.

Miranda Nazzaro at The Hill:

A new report from the Centers for Disease Control and Prevention (CDC) found that more than 90 percent of the children infected in last year’s measles outbreak in Ohio were unvaccinated.

The report published Friday looked at the 85 total confirmed cases, all among children located in central Ohio, and found 94 percent of them did not receive the MMR vaccine, which protects against measles, mumps and rubella. Additionally, 80 out of the 85 cases were in children under the age of 5, according to Columbus Public Health.

Helen Branswell at STAT: 

[The] reality of measles as a disease that strikes almost uniquely in childhood is changing. The shift is driven in part by the fact that the first wave of children whose parents shunned vaccination in the late 1990s and early 2000s — in response to a fallacious, since-retracted study in the Lancet that linked measles vaccine to autism — are now in young adulthood.

A recent report from the United Kingdom’s Health Security Agency suggested the growing pool of non-immune adults — known as susceptibles in the lexicon of epidemiology — could fuel future measles outbreaks.

There is also a growing body of adults in this country who have no immunity against measles, experts say. In fact, since the year 2000, about 40% of measles cases in the U.S. have been in adults, with about one-quarter in people aged 20 to 29.

The US Military Discriminates Against Autistic People Who Want to Serve

In The Politics of Autism, I discuss military personnel and military families.  

Jennifer Barnhill at The War Horse:

Autism is one of hundreds of conditions—from asthma to attention-deficit/hyperactivity disorder to a history of anxiety—the Defense Department says disqualifies people from serving in the military.

The average American doesn’t meet the basic qualifications to serve, and the pool of eligible Americans has dropped from 29% in 2013 to 23% in 2023. About 4% of eligible applicants would be ruled out for psychological and developmental diagnoses, such as autism, depression or attention-deficit/hyperactivity disorder, according to the Defense Department, which works out to thousands of potential recruits a year.

More than five million Americans have been diagnosed with autism spectrum disorder, according to a U.S. Centers for Disease Control study in 2020.(iStock/Getty Images)

As the military faces a recruiting crisis, with the Army, Navy, and Air Force expected to miss their goals this year, the military medical waiver process may no longer be serving the services. Qualified candidates may not bother to apply because the process is so opaque—enough so that Congress has enacted legislation to ensure medical waivers do not “inappropriately” disqualify candidates. And how each service processes medical waivers varies, frustrating recruiters and recruits alike. This affects a generation of potential recruits—including young adults diagnosed with ADHD or people with a diagnosis on the autism spectrum who may be more inclined to choose careers in cybersecurity or coding—who often have the focus on detail and ability to see patterns the military needs to protect the United States.

However, the Defense Department has launched a pilot program to try to streamline the issue, and it looks as if recent changes may have affected the number of potential recruits being turned away.

Special Education Shortage

 In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. II also discuss the day-to-day challenges facing autistic people and their families. 

Katherine Schaeffer at Pew:

During the 2020-21 school year, 40% of public schools that had a special education teaching vacancy reported that they either found it very difficult to fill the position or were not able to do so.

Foreign languages (43%) and physical sciences (37%) were the only subjects with similarly large shares of hard-to-fill teaching vacancies at public schools that were looking to hire in those fields.

While the COVID-19 pandemic called attention to a nationwide teacher shortage, special education positions have long been among the most difficult for school districts to fill.

Blue Envelopes in Massachusetts

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

Ilyse Levine-Kanji at WBUR-FM:

The “Blue Envelope Bill,” currently before our Legislature’s Senate Ways and Means committee, could make these potentially disastrous encounters far less likely. The bill would allow a driver with an autism diagnosis to request a blue envelope — which could be attached to the driver’s-side sun visor — to alert law enforcement of the driver’s diagnosis in case of a traffic stop or accident. These blue envelopes could help to avoid potentially tragic misunderstandings at minimal cost.

The bill has the support of the Massachusetts Chiefs of Police Association, the State Police Association of Massachusetts Troopers, the Massachusetts Police Association and the Municipal Police Training Institute. The legislation under consideration is modeled after a law Connecticut implemented in 2020, at the urging of the Connecticut Police Chiefs Association.

This would affect more individuals and families than you might think. About one in 36 children in the United States is estimated to have autism. And there’s a troubling connection between people with an intellectual, developmental and/or psychiatric disability (including autism) and police violence. For example, a 2016 study (that looked at data from 2013 to 2015) found that disabled individuals make up one-third to one-half of all police shooting victims. Time reported in 2020 that “there is no reliable national database tracking how many people with disabilities, or who are experiencing episodes of mental illness, are shot by police each year” (the topic for another essay) but it seems likely that disabled individuals who are also Black have an even higher likelihood of being the target of police violence.

Bogus Claim about Vaccines and Autism in Vietnam

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.

 Long Nguyen at AFP:

A video circulating on social media claims vaccines brought to Vietnam by the Bill and Melinda Gates Foundation led to a massive increase in the number of autism patients in the country. This is false; research shows no link between vaccination and autism, and Vietnamese experts said growing awareness and changes to diagnosis criteria have contributed to more people being identified with the neurodevelopmental disorder.

"No autism in Vietnam before Bill Gates," says text over a video shared July 17, 2023 on Instagram.
....
"There is no link between vaccination and autism in Vietnam or other countries," said Quyet Minh Nguyen, a psychiatrist at the Vietnam National Children's Hospital.

Autism spectrum disorder (ASD) is a developmental disability. Scientists are still researching its causes, which may include genetic or other factors, according to Nguyen.

"Saying vaccination causes autism is unscientific," he told AFP.

The footage shared online includes a watermark that indicates it was cut from the controversial documentary "Vaxxed: From Cover-up to Catastrophe."

The film was directed by Andrew Wakefield, a British doctor whose medical license was revoked after he falsified data in a 1998 paper linking autism to the measles, mumps and rubella (MMR) vaccine. The Lancet retracted the study years later, but it continues to fuel misinformation.

Scientists have repeatedly quashed claims that autism and vaccination are connected (archived here)

Biases in Autism Research

In The Politics of Autism, I discuss autism research  -- and the opinions of autistic people about research priorities.

Hari Srinivasan at Time:

Just as psychology research had its WEIRD (“western, educated, industrialized, rich and democratic”) sampling bias, autism research has not only a WEIRD sampling bias, but also has essentially oversampled the same, narrow band of what are considered the easily “researchable autistics,” and expected those findings (as well as the applications and interventions that resulted from them) to apply to everyone.

But the spectrum is far more diverse and heterogeneous than we realize. Sure enough, even as I review past autism research as part of my studies, I look at the autistic participant profiles and the truth is that a majority don’t represent autistics like me. Autism research participant selection is filled with implicit and explicit exclusionary criteria, such as IQ cut-offs, ability to be able to sit still, to perform tasks and engage, to respond orally and not have co-occurring or complex conditions. But why should IQ be an exclusionary criterion when it is mutable and has been historically problematic for marginalized groups? I have to then wonder how findings from studies with so many exclusionary criteria would benefit autistics like me.