ReelAbilities

In The Politics of Autism, I discuss depictions of ASD in popular culture. 

Abbey White at The Hollywood Reporter:

ReelAbilities Film Festival has announced a new streaming platform dedicated to curating, supporting and streaming films and short films around disability.

Launching Tuesday during Disability Pride month and ahead of the 33rd anniversary of the signing of the Americans with Disabilities Act, ReelAbilitiesStream.org features a library of more than 50 films featured at previous editions of the festival that celebrate and explore the lives and experiences of people with disabilities. The launch marks the platform, which utilizes as pay-per-view model, as the largest online hub for disability-themed films.

The Perez Case

 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. 

Robyn Powell at The Regulatory Review:

The Perez case that was decided by the Supreme Court in March highlights such concerns. Between the ages of 9 and 20, Miguel Luna Perez attended Sturgis Public School District in Michigan. Because he is deaf, Miguel was entitled to have an American Sign Language (ASL) interpreter in his classes. However, the assigned aide lacked qualifications and provided inadequate support, hindering Miguel’s learning and communication. Moreover, Sturgis school officials misrepresented Miguel’s progress, leading the Perez family to believe he would graduate on time, only to be informed months before graduation that he would not receive a diploma.

...

In a unanimous decision written by Justice Gorsuch, the Supreme Court adopted the Perez family’s interpretation. The Court clarified that section 1415(l) applies only to lawsuits seeking relief available under the IDEA. It emphasized that “remedies” and “relief” are synonymous in the context of section 1415, as treated in other parts of the statute.

As a result, the exhaustion requirement did not bar the Perez family’s ADA lawsuit because the damages sought were not available under the IDEA. The Court’s decision strengthens the implementation of FAPE rights, allowing students to seek monetary damages under non-IDEA civil rights laws and injunctive relief through IDEA administrative procedures.

Ultimately, the Court’s recent ruling significantly shifts the power dynamic between students with disabilities, their families, and school districts. It empowers students and parents by providing them with essential tools to address and rectify violations of disabled students’ educational rights.

Abandonment in Colorado

In The Politics of Autism, I discuss health care issues and state social services for people with intellectual and developmental disabilities.

Sometimes, emergency rooms are a place of abandonment.

Shaun Boyd at CBS News Colorado: 

A 13-year-old boy with Autism has been forced to live at UCHealth Longs Peak Hospital in Longmont for three weeks after his dad abandoned him and human service workers told hospital employees it would take months to secure placement for the boy due to a lack of resources.

A hospital employee emailed state Rep. Judy Amabile of Boulder last week asking her to intervene.

The employee said Boulder County Human Service workers initially agreed to take custody of the boy and then refused saying he was safe in an emergency department.

"Boulder County DHS has not spent more than five minutes with this child since his arrival three weeks ago," the hospital employee wrote.

State IDEA Performance

 In The Politics of Autism, I write about social services, special education and the Individuals with Disabilities Education Act. 

From the Department of Education:

Following is a list of each State’s performance in meeting the requirements of IDEA Part B, 
which serves students with disabilities, ages 3 through 21:

MEETS REQUIREMENTS

• Alabama
• Arkansas
• Connecticut
• Florida
• Idaho
• Illinois
• Indiana
• Kansas
• Kentucky
• Massachusetts
• Minnesota
• Missouri
• Nebraska
• New Jersey
• Ohio
• Pennsylvania
• Republic of the Marshall
• Islands
• Rhode Island
• South Dakota
• Washington
• West Virginia
• Wisconsin
• Wyoming

NEEDS ASSISTANCE (one year)

• Georgia
• Maine
• New Hampshire
• Oklahoma
• Oregon
• Virginia

NEEDS ASSISTANCE (two or more consecutive years)

• Alaska
• American Samoa
• Arizona
• California
• Colorado
• Commonwealth of the
• Northern Mariana
• Islands
• Delaware
• District Of Columbia
• Guam
• Hawaii
• Iowa
• Louisiana
• Maryland
• Michigan
• Mississippi
• Montana
• Nevada
• New Mexico
• New York
• North Carolina
• North Dakota
• Puerto Rico
• Republic of Palau
• South Carolina
• Tennessee
• Texas
• Utah
• Vermont
• Virgin Islands

NEEDS INTERVENTION

• Bureau of Indian Education
• Federated States of Micronesia

Disability Employment Mid-2023

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

Rob Wile at NBC News:

People with disabilities have been among the greatest beneficiaries of the strong post-pandemic rebound in the labor market.

And on Friday, the Bureau of Labor Statistics added another data point to this trend.

Among that group, the number of employed individuals climbed by approximately 175,000 in June to 7.6 million, the BLS said, higher than at any point since June 2008, the earliest year for which data is available.

As a percentage, the employment-to-population ratio for disabled individuals also now stands at a record high of 22.4%.

... 

"It's continuing to grow — and moving up every month it seems like," said Allison Chase, president and CEO of The Able Trust, a Florida-based nonprofit focused on the disabled community. "It's unprecedented, and we’re really excited about it."

...
Chase noted that basic transportation is one of the biggest barriers many people with disabilities have faced when looking for work.

The post-pandemic remote-work boom, she said, has helped to eliminate that obstacle.

"It's something that many people with disabilities have wanted for a long time," Chase said. "Once you take it [transportation] out of the equation, a lot of jobs open up."

Samoa and the Antivax Death Toll

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.

 At MSNBC, Mehdi Hassan reports on what he did to Samoa.  Kids died.

RFK and Wakefield

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.

Derek Beres, Matthew Remski, and Julian Walker at Time:

By 2019, Kennedy was the leading buyer of antivax ads on Facebook, and was implicated in a measles outbreak in Samoa that infected 5,700 and killed 83. The outbreak followed the tragic deaths of two children who had received contaminated vaccines. Kennedy traveled to Samoa, and was pictured with a local antivax advocate. This was followed by Children’s Health Defense sending a letter to the Prime Minister of Samoa, urging him to question the general safety of the Measles, Mumps, & Rubella (MMR) vaccine. This tragedy echoed the measles outbreaks in Somali immigrant communities in Minnesota in 2011 and 2017.

The Somalis had been specifically targeted by the antivax propagandist Andrew Wakefield, whose falsified 1998 study started the still-lingering conspiracy theory that the MMR vaccine causes autism. More than a year before Kennedy lost his Instagram account for spreading medical misinformation, he used it to sing Wakefield’s praises, dubbing him “among the most unjustly vilified figures of modern history.” In 2021, the Center for Countering Digital Hate linked Kennedy on their list of the 12 influencers responsible for up to 73% of all antivax content on Facebook, and 65% of all digital antivax content overall. (Kennedy was reinstated to Instagram on June 4, 2023, on the grounds that he’s running for president.)

Debate

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.

Dr. Marc Siegel at USA Today:

Several years ago, I debated David Kirby, author of the 2006 book "Evidence of Harm," in a public forum for PBS. The subject was vaccine safety and whether mercury in vaccines somehow caused autism. It was a spirited debate, during which I maintained that the causal link among vaccines, the mercury-containing additive thimerosal and autism had never been shown.

After the debate, Kirby surprised me by agreeing that the link had not been proved. “But it was worth the investigation,” he said.

I disagreed. “Billions of dollars that could have been spent determining what really causes autism were used up on this effort,” I replied.

Now, Democratic presidential candidate Robert F. Kennedy Jr. continues to try to make the connection between thimerosal-containing vaccines and autism, despite the fact that studies involving millions of children have shown no connection.

 Imagine Debating a Gravity Denier

Antivaccine activists have demanded that vaccine scientists debate their champion, Robert F. Kennedy, Jr. That’s only the beginning. One can picture future debates over gravity.

MODERATOR: Welcome to our studio audience and millions watching online. We are pleased to have a debate about gravity between a distinguished professor of physics at CalTech and the president of the Gravity Truther Society. Professor, could you start by telling us what you think gravity is?

PROFESSOR: Well, according to Einstein’s general theory of relativity, gravity is the curvature of spacetime caused by the presence of matter.

TRUTHER: There you have it! The whole thing is just a theory cooked up more than a hundred years ago by a Jewish patent clerk. It’s been perpetuated by the Gravity Industrial Complex, or as we call it, Big Grav. They make billions of dollars selling things like parachutes. And speaking of which, where are the randomized double-blind control studies of parachutes, huh?

PROFESSOR: Come on, we would not push blindfolded people out of planes without parachutes.

TRUTHER: So no double-blind experiments! Big Grav bankrolls the fake “research” [AIR QUOTES] by so-called scientists like you.

PROFESSOR: I have to object to this conspiracy theory. I’ve had a long career, starting with a Ph.D. from MIT.

TRUTHER: Forgive me for not bending the knee to wealthy schools in California and Massachusetts. I have a Ph.D., too! It’s from the Tampa Institute of Antigravity Studies.

PROFESSOR: That’s not even an accredited…

TRUTHER: Accredited? As Governor DeSantis says, these private accrediting outfits are part of the problem. They push their destructive ideologies and don’t let students hear alternative points of view. During all your years at MIT and CalTech, did you ever once question gravity?

PROFESSOR: Of course not. Gravity is real. There is no alternative point of view here.

TRUTHER: So you admit that you are biased. That totally wins my case.

PROFESSOR: There is a vast scientific literature on the subject, and I will gladly share citations with anyone who wants to read them.

TRUTHER: Typical establishment arrogance. The elitists have their literature, and we the people have ours. Just check out scientific accounts of levitation at our website or The National Enquirer. The most important thing is this: I know I’m right because I levitate every day.

PROFESSOR: What? Wait, can you prove that you levitate?

TRUTHER: Can you prove that I don’t?

MODERATOR: Good point. Our studio audience is very interested in this subject. So this is an excellent time to hear from one of them. Yes, ma’am?

AUDIENCE MEMBER: I have a simple question for the professor. If gravity exists, how come there is not one single word about it in the Bible?

PROFESSOR: Many true things aren’t in the Bible, such as dinosaurs.

AUDIENCE MEMBER: How do you know there were dinosaurs? Were you there?

PROFESSOR: No, but the fossils…

AUDIENCE MEMBER: The fossils were just dogs and elephants with bone disease.

TRUTHER: You’re correct, ma’am. Scripture raises fundamental questions about gravity. Elijah had a chariot of fire, right? Why didn’t it burn up on the ground instead of going to Heaven?

MODERATOR: That’s a fascinating point of theology.

TRUTHER: You don’t have to be religious to realize that gravity is fake. The Chinese communists know that better than anybody. Just look at that giant balloon they sent over America. If gravity existed, how come it stayed up in the sky, huh?

PROFESSOR: That’s silly. It was merely a matter of air pressure…

TRUTHER: Wrong! Other things stay up in the sky, too: birds, planes, Superman.

PROFESSOR: Wait a minute, Superman is just special effects done by a Hollywood computer.

TRUTHER: Oh yeah? What’s next? Are you going to tell us that Stanley Kubrick faked the moon landing in his studio? Who’s the conspiracy theorist now?

[LAUGHTER AND THUNDEROUS APPLAUSE FROM THE STUDIO AUDIENCE]

MODERATOR: That’s that. We’re out of time. Our guests will just have to agree to disagree. Thanks for watching.

John J. Pitney, Jr. is a professor of government at Claremont McKenna College and the author of The Politics of Autism.

CARD Developments

 The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.  There are critics.

At Forbes, Phoebe Liu reports on the Center for Autism and Related Disorders:

By the time Blackstone took over, the company had already been struggling with employee turnover, especially that of entry-level therapists, due to a combination of low wages, the emotionally taxing work and frequent cancellations that led to an unstable income and schedule. [Doreen] Granpeesheh says CARD’s wages were “competitive” and emphasizes that its 24% turnover rate at that time among therapists was fairly standard in the autism treatment industry—not CARD-specific issues. Granpeesheh stayed on as CEO until the end of 2019. She wrote in a LinkedIn post in January this year that she stepped down because she was “tired and wanted time with [her] family … 40 years was long enough.”

Things got worse during the pandemic. Closures followed.

On June 11, 2023, CARD filed for Chapter 11 bankruptcy with just $2 million of cash in the bank and more than $240 million in debt, according to court filings, which also show that Granpeesheh now has a 21% stake in the bankrupt CARD. (Employees who reinvested some of their shares have 9% and Blackstone has the remaining 70%.)

Two days prior, as part of the bankruptcy proceedings, Granpeesheh and her business partner Sangam Pant—a managing partner at CARD from 2014 to 2019—entered an agreement to purchase the company for just $25 million, on top of assuming some of CARD’s liabilities. Granpeesheh says she can’t disclose the exact breakdown of the deal but that she is the majority owner; court filings say she will be responsible for 60% of guaranteed debts.

...

But she will have to face an environment that isn’t as friendly to ABA as it was in CARD’s fastest-growing days. Although punitive measures in ABA like using electric skin shock to correct behavior are mostly phased out, the therapy still has its critics, who say it prevents autistic children from engaging in self-stimulatory behavior like repeated motions or noises that can bring them relief. The University of Stirling’s Botha says the therapy is based on a “cruel” premise of making autistic people “appear normal.” The American Medical Association voted to remove its explicit endorsement of ABA at its annual meeting in mid-June, citing a need for more research on ABA’s potential negative effects and on treatment alternatives.

RFK Interview

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.

Alex Griffing at Mediaite:

Robert F Kennedy Jr. recently spoke with Reason magazine for a lengthy interview about his 2024 presidential campaign and was asked directly about the myriad of widely debunked conspiracy theories he has peddled in the past in a brutal line of questioning.

Reason editor at large Nick Gillespie asked the question an hour into the interview from late last week, noting “One of the critiques of your candidacy or even your public profile is that you traffic routinely in conspiracies and that kind of conspiracist mindset where almost everything that we take for granted is bad.”

...

Gillespie again asked Kennedy how he addresses the criticism he is a conspiracy theorist. Kennedy again challenged his critics to “show me where I get it wrong.” Gillespie then challenged Kennedy on his now-retracted article in Rolling Stone in which he claimed vaccines cause autism. Kennedy defended the article insisting no one has shown “one mistake” he made in the article.

 

Reports of Discrimination in Health Care

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. 
People with autism and other disabilities have faced discrimination in organ transplants.  During the pandemic, they faced discrimination in the availability of ventilators.  And along with other people with disabilities, they reportedly encounter discrimination in health care more generally.

Stefanie G. Ames and colleagues have an article at Pediatrics titled "Perceived Disability-Based Discrimination in Health Care for Children With Medical Complexity."
A commentary has been published: Discriminating Against Children With Medical Complexity
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BACKGROUND AND OBJECTIVES

Disability-based discrimination in health care can lead to low quality of care, limited access to care, and negative health consequences. Yet, little is known regarding the experiences of disability-based discrimination in health care for children with medical complexity and disability. An understanding of disability-based discrimination in pediatrics is needed to drive change and improve care.

METHODS

We conducted in-depth, semistructured interviews with caregivers of children with medical complexity and disability. Participants were purposefully recruited through national advocacy and research networks. Interviews were conducted via video conferencing, recorded, and transcribed. Data collection and analysis occurred iteratively. An inductive thematic analysis approach with constant comparison methods was used to identify themes that form a conceptual framework of disability-based discrimination in health care.

RESULTS

Thirty participants from diverse backgrounds were interviewed. Six themes emerged, forming a conceptual framework of disability-based discrimination in health care. Three themes described drivers of discrimination: lack of clinician knowledge, clinician apathy, and clinician assumptions. Three themes described manifestations of discrimination: limited accessibility to care, substandard care, and dehumanization.

CONCLUSIONS

Children with medical complexity may face disability-based discrimination in health care. Themes describing the drivers and manifestations of discrimination offer a conceptual framework of disability-based discrimination. Understanding the drivers and acknowledging perceived manifestations can provide insight into improving patient care for children with disabilities.

...

Although not yet studied well in pediatric health care, clinicians’ limited self-efficacy in caring for patients with disability may perpetuate disparities in health care accessibility and contribute to poor health outcomes.20–22

Exemplar quotation:

And then she said, “But here’s the thing.” She’s like, “Honestly, we don’t want to work with autistic children.” And she said, “They’re just really hard.” And she said, “So, you know, we just are really hopeful that someone in the community will want to work with him, but we’re not it. We are going to focus on working with children who are not autistic.” 

 

20 Roux  AM, Rast JE,Shea LL. Family perceptions of health care access for autistic young adults receiving disability services. Pediatrics.2022;149(Suppl 4):e2020049437SGoogle Scholar  Crossref PubMed 

Puzzle Piece, Infinity Symbol, Rainbow

In The Politics of Autism, I write that everything about autism is controversial

Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about?

Even the graphic art is cause for argument.

From the AJ Drexel Autism Institute:

... For the autism community the puzzle piece has long been associated with the community. Its origins can be traced back to the late 1960s when the Autism Society of America (ASA) adopted the symbol as its logo. Since the early aughts there has been a growing movement within the autism community to move away from the puzzle piece symbol and adopt alternative symbols that promote acceptance, autonomy, and celebration of neurodiversity. Some of the key reasons why the puzzle piece is problematic are highlighted below:

1. Oversimplification:The puzzle piece, with its connotation of missing or incomplete parts, implies that autistic people are somehow incomplete or broken.
2. Medicalization: The puzzle piece symbolizes focusing on finding a way to "fix" autism rather than accepting and accommodating neurodiversity. It promotes a medical model that disregards the experiences, strengths, and contributions of autistic individuals.
3. Lack of Autistic Representation: The puzzle piece was initially created by and for non-autistic individuals, raising concerns about excluding the very people it seeks to represent. Some autistic individuals prefer symbols emphasizing acceptance, understanding, and empowerment rather than puzzle imagery.

...

There are several alternative symbols one can use to represent the autism community. The infinity symbol (a figure eight on its side) was created by autistic people, representing all forms of neurodiversity, not just autism. It represents the idea of infinite possibilities and acceptance. The rainbow is often associated with diversity and inclusion. Some individuals and organizations have used a rainbow-colored ribbon or infinity symbol. Butterflies are also another well-known alternative, and they symbolize transformation and growth.

My son Joshua combined the rainbow and infinity symbols for his short film, Infinite:

 

Section 504 Trainings

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

Karen M. Tani, "After 504: Training the Citizen-Enforcers of Disability Rights,:" Disability Studies Quarterly  Vol. 42 No. 3-4 (2023): Summer 2023

Who made disability civil rights law? And how did disability civil rights law, in turn, shape its subjects? This article is about what followed from the enactment of Section 504 of the Rehabilitation Act of 1973, 3 which disability rights advocates understood as their inaugural civil rights law and which became a template for the better-known Americans with Disabilities Act (1990) ("ADA"). 4 Specifically, this article recounts the history of the "Section 504 trainings," a series of government-funded convenings held all over the country in the late 1970s and early 1980s. The Berkeley-based Center for Independent Living ("CIL") ran many of them, through a legal arm that eventually became the Disability Rights Education and Law Center ("DREDF"). In doing so, the organization taught thousands of disabled people to think about Section 504 in a capacious, affirmative way. CIL trainers also used these convenings to try to affect participants' understanding of disability and its role in their lives.

...

One consequence, according to some people involved with the trainings, was the creation of a nationwide, grassroots network for DLRC, which during this period became the Disability Rights Education and Defense Fund (DREDF) and formally separated from CIL. Over the next decade, DREDF would famously combat executive branch efforts to defang Section 504 and also help spur the enactment of the ADA.