Restraint in a California District

In The Politics of Autism, I discuss the use of restraint and seclusion. Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

Jonathan Ayestas at KCRA-TV:

The Folsom Cordova Unified School District was in violation of its use of restraint and seclusion when it comes to students with disabilities, a federal review found. Some of these violations include restraining students for several hours at a time in isolated rooms.

According to the school district, the United States Department of Education Office for Civil Rights launched a review of 20 school districts across the country, Folsom Cordova included. A statement from the school district states the review was launched after the alleged restraint death of Max Benson in 2018.

Benson was a 13-year-old student with autism who went to Guiding Hands of the Davis Joint Unified School District. Guiding Hands is a non-public school that served 140 students at the time, seven of them from Folsom Cordova.

Three staff members were indicted in connection, and Guiding Hands has since closed down.

The review from the Department of Education found that the school district overall "infrequently held Individualized Education Program meetings for students after they were restrained or secluded."

OCR resolved a compliance review of Folsom Cordova Unified School District (CA) finding that their restraint and seclusion policies and practices denied students with disabilities a free appropriate public education (FAPE). https://t.co/o168bYmeKi (1/3) pic.twitter.com/aUuiYX6lcS

— ED Civil Rights (@EDcivilrights) October 12, 2023

Health Care Discrimination

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.

"Adults With Disabilities Experienced Unfair Treatment in 2022," Robert Wood Johnson Foundation Brief Oct-11-2023 | Gonzalez D , Kenney GM , Karpman M , and Morriss S

The Issue

Four in 10 adults with disabilities reported experiencing unfair treatment in healthcare settings, at work, or when applying for public benefits because of their disabilities or other personal characteristics in 2022. 

Key Findings

71 percent of adults with disabilities who reported experiencing unfair treatment in healthcare settings reported a subsequent disruption to care, including delaying (54%) or forgoing (50%) needed care and not following clinician recommendations (31%).

Almost half (46%) of adults with disabilities who experienced unfair treatment in workplaces reported looking for a new job because of the way they were treated. 

About 71 percent of adults with disabilities who experienced unfair treatment in social service settings had difficulty receiving public benefits, including delaying (45%) or forgoing (57%) benefits.

Black and Hispanic/Latinx adults with disabilities were more likely to report unfair treatment because of their race, ethnicity, country of origin, or primary language compared to White adults with disabilities. 

Conclusion

Despite laws prohibiting discrimination against people with disabilities, unequal treatment persists. Improving equity for people with disability for people with disabilities requires continuous investment from policymakers and the public and private sectors.

Housing for Autistic People

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

David Chiu at People:

A New Jersey town will be the future site for a one-of-a-kind residential housing complex for adults with autism.

The Red Bank zoning board recently approved a plan last month to construct and develop an apartment building for neurodiverse adults, the Two River Times reported, which would be the first one ever in the Garden State.

According to a press release, the THRIVE Red Bank project will consist of 32 one-bedroom apartments to encourage independent living for adults with autism. The building’s amenities will include a teaching kitchen, workout spaces and socialization areas.

Karen Fluharty, a mother of an adult son with autism, is one of the people who spearheaded THRIVE Red Bank through Parents With A Plan, a nonprofit organization she co-founded whose mission is "to develop a model community for adults with autism and other related developmental disorders."

RFK Jr. Will Hurt Trump

  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.

He is now running as an independent and could tip the swing state of Georgia away from the Republicans.

Katherine Fung at Newsweek:

Kennedy's Monday announcement is most likely to have an outsized impact on the 2024 election in Georgia, where only 59 percent of the population is fully vaccinated against COVID-19. Nationally, 69 percent of Americans are fully vaccinated, data from the Centers for Disease Control and Prevention shows. Only eight other states have rates lower than Georgia—Alaska, Alabama, Arkansas, Idaho, Louisiana, Mississippi, Tennessee and Wyoming—all of which are Republican strongholds.

...

There has been debate over whether it will be the Republicans or the Democrats who feel the effects of Kennedy's bid, with some arguing that an independent Kennedy could attract centrist voters who think Biden is too progressive and others arguing that Kennedy being on the ballot could pull votes away from Trump's anti-government supporters.

When it comes to Georgia's vaccine critics, Trey Hood, a political science professor at the University of Georgia focused on southern politics, told Newsweek that Kennedy's announcement would hinder Trump's campaign.

"You might have a certain subset of Republicans who really want to sort of vote against [former National Institute of Allergy and Infectious Diseases Director Anthony] Fauci... if they're really still upset about the pandemic and the vaccinations," Hood said. "[Kennedy] would probably take votes away from Trump more than from Biden."

Michael Scherer at WP:

Attorney Robert F. Kennedy Jr.’s pivot Monday to an independent run for president met immediate resistance from Republican leaders, who have concluded that his new effort threatens to cannibalize their vote share next year, helping to reelect President Biden.
Keeping up with politics is easy with The 5-Minute Fix Newsletter, in your inbox weekdays.

The Republican National Committee greeted his announcement with a press release that described Kennedy as “just another radical, far-left Democrat,” with a number of talking points that could be used by the expansive network of conservative commentators who tend to take messaging cues from the party.

“Make no mistake — a Democrat in Independent’s clothing is still a Democrat. RFK Jr. cannot hide from his record of endorsing Hillary, supporting the Green New Deal, fighting against the Keystone Pipeline, and praising AOC’s tax hikes — he is your typical elitist liberal and voters won’t be fooled,” RNC Chairwoman Ronna McDaniel said in a statement.

Steven Cheung, a spokesman for former president Donald Trump’s campaign, echoed the condemnation. “Voters should not be deceived by anyone who pretends to have conservative values,” Cheung said in a statement. An “RFK candidacy is nothing more than a vanity project for a liberal Kennedy to cash in on his family’s name.”

 

Young Children Who Lose the Diagnosis

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

A release from Boston Children's Hospital:

In a study published in JAMA Pediatrics, researchers at Boston Children's Hospital shed new light on the evolving nature of Autism Spectrum Disorder (ASD) diagnoses in early childhood. Diagnosing ASD at a young age is important for early intervention and treatment, but this new study suggests that not all kids continue to meet the criteria for ASD as they get older.

The team found that 37% of children diagnosed with ASD as toddlers no longer meet the criteria for ASD around the age of six. Children with lower adaptive skills—essential everyday abilities encompassing communication, self-care, and decision-making—tend to be more likely to have ASD persist later in life.

These findings underscore the nuanced nature of ASD and the importance of ongoing assessments throughout a child's developmental journey. Elizabeth Harstad, MD, MPH, Attending Physician in Developmental Medicine at Boston Children's and the leader of the study, emphasizes the significance of seeking evaluations for developmental concerns and encourages parents and caregivers to remain open to the possibility of evolving diagnoses over time.

Dr. Harstad notes, "It is important to recognize that diagnoses can evolve as a child develops. Our research shows how important it is that we monitor kids over time, because some children may really have changes in their social communication and behavioral function. This underscores the need for continuous assessments and adaptable intervention strategies."

While the study provides crucial insights into the developmental trajectory of ASD, William Barbaresi, MD, Chief of Developmental Medicine at Boston Children's and senior author on the paper, emphasizes the need for further evidence to determine the effectiveness of interventions on long-term outcomes.

All of the children in this study received interventions after their initial ASD diagnosis, with the highest amount of interventions received in the 18 months after diagnosis. The team did not find a significant relationship between the persistence of ASD and intensity of interventions received by children in the 18 months after the initial diagnosis. Thus, these findings suggest that more research on the impacts of individualized interventions on development is needed.

The implications of this research are far-reaching, as it calls for a reevaluation of current practices in caring for young children with ASD. The study signals the need for a shift towards a more dynamic and individualized approach to intervention.

"It is possible that children who no longer have autism at age six may have responded better to treatment than children whose autism persisted. The findings of the study should cause a very frank reconsideration of the need for far more research to understand if current treatment for autism is working, or if major new efforts to develop treatment approaches are needed," said Dr. Barbaresi.


More information: Elizabeth Harstad et al, Persistence of Autism Spectrum Disorder From Early Childhood Through School Age, JAMA Pediatrics (2023). DOI: 10.1001/jamapediatrics.2023.4003. jamanetwork.com/journals/jamap … cle-abstract/2810092

Journal information: JAMA Pediatrics

RFK and "Censorship"

  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.

David Freedlander at POLITICO:

This feeling, that he wasn’t being properly heard and considered, and that so-called experts were dismissing him, is not a new one for Kennedy. In 2014, Kennedy wrote a book titled Thimerosal: Let the Science Speak, which picked up on an argument Kennedy made in a 2005 article co-published in both Salon and Rolling Stone which alleged that childhood vaccines caused autism. The article was so error-ridden — including by vastly overstating the amount of mercury in vaccines, conflating ethylmercury with methylmercury, misattributing quotes and getting basic factual details wrong — that it received five major corrections within days of publication, and in 2011 was retracted entirely by Salon, which could no longer stand by the piece.

For the book, Kennedy told me he spent a year reading the literature on PubMed, a database of medical studies. “And I just thought: ‘When this book is published, it’s over, they are going to take this stuff out and everybody is going to feel like we made a mistake and we have to go fix this.’ And instead, it wasn’t a ripple. The book was totally censored. It was reviewed 12 times by people, all of whom hadn’t read it,” he said, without explaining that’s because there were no pre-publication copies made available by his publisher, Skyhorse. (For what it is worth, subsequent reviews have been no kinder; Time Magazine said that Kennedy was “wrong — utterly wrong, so wrong it’s hard even to know what the biggest piece of that wrongness is.”)

BPA

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

A release from Rowan University:

The incidence of autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) has greatly increased over the last few decades. The reasons are largely unknown although environmental factors are believed to be important.

According to a new study published in the public access journal PLOS ONE by researchers at Rowan-Virtua School of Osteopathic Medicine and Rutgers University-New Jersey Medical School, Newark, children with ASD and ADHD often have a reduced ability to clear the common plastic additive, bisphenol A (BPA), from their bodies, thereby increasing their exposure to BPA.

Previous studies found associations between children with autism and exposure to BPA. This study, “Bisphenol-A and phthalate metabolism in children with neurodevelopmental disorders,” found that the reason for the link is decreased efficiency in a key step involved in BPA detoxification.

After BPA is ingested or inhaled, it is filtered from the blood in the liver through a process called glucuronidation. Glucuronidation is the process of adding a sugar molecule to a toxin. Doing so makes the toxin water soluble, allowing it to quickly pass out of the body through urine.

Humans show genetic variability in their ability to detoxify BPA. Genetically susceptible individuals have more difficulty detoxifying their blood through this process, meaning their tissues are exposed to BPA at higher concentrations for longer time periods.

The study showed that for a significant proportion of children with autism, the ability to add the glucose molecule to BPA is about 10 percent less than that of control children. For a significant proportion of children with ADHD, it’s about 17 percent less.

The compromised ability to clear such environmental pollutants from the body is “the first hard biochemical evidence of what the linkage is between BPA and the development of autism or ADHD,” said T. Peter Stein, the study’s lead author and a Rowan-Virtua professor of surgery. “We were surprised to find that ADHD shows the same defect in BPA detoxification.”

More research is needed to determine whether autism and ADHD are developed in utero through increased exposure to the mother or to the child sometime following birth, Stein said.

There are likely to be other factors behind the development of autism and ADHD, Stein said. The inability to effectively clear these chemicals from the blood is not present in every child with the neurodevelopmental disorders, but compromised clearance of BPA is a “major pathway, otherwise it would not have been so readily detectable in a study of moderate size,” Stein said.

The team measured the efficiency of glucuronidation in three groups of children recruited from Rutgers-New Jersey Medical School clinics: 66 with autism, 46 with ADHD and 37 healthy children.

The study’s co-authors are Margaret D. Schluter and Robert A. Steer at the Rowan-Virtua School of Osteopathic Medicine and Xue Ming at Rutgers University–New Jersey Medical School, Newark.

Study link: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0289841

 BPA a very long and growing list of other correlates, risk factors, and possible causes that have been the subject of serious studies:

1. Inflammatory bowel disease;
2. Pesticides;
3. Air pollution and proximity to freeways;
4. Maternal thyroid issues;
5. Autoimmune disorders;
6. Induced labor;
7. Preterm birth;
8. Fever;  
9. Birth by cesarean section;
10. Anesthesia during cesarean sections;
11. Maternal and paternal obesity;
12. Maternal diabetes;
13. Maternal and paternal age;
14. Grandparental age;
15. Maternal post-traumatic stress disorder;
16. Maternal anorexia;
17. Smoking during pregnancy;
18. Cannabis use during pregnancy;
19. Antidepressant use during pregnancy;
20. Polycystic ovary syndrome;
21. Infant opioid withdrawal;
22. Zinc deficiency;
23. Sulfate deficiency;
24. Processed foods;
25. Maternal occupational exposure to solvents;
26. Congenital heart disease;
27. Insufficient placental allopregnanolone.
28. Estrogen in the womb;
29. Morning sickness;
30. Paternal family history;
31. Parental preterm birth;
32. Antiseizure meds
33. Location of forebears
34. Lithium
35. Aspartame

Autistic Adults on Medicaid

The Politics of Autism includes an extensive discussion of insurance and Medicaid services.

Eric Rubenstein and colleagues have an article at JAMA Psychiattry titled "Prevalence of Autism Among Medicaid-Enrolled Adults."

Key Points

Question What is the prevalence of identified autism in Medicaid-enrolled adults, and how has Medicaid enrollment changed over time and by other demographic factors?

Findings In this cohort study of 403 028 Medicaid enrollees with autism claims over 9 years of claims data, autism prevalence increased from 4.2 per 1000 enrollees in 2011 to 9.5 per 1000 enrollees in 2019. The largest increase was observed in the 25- to 34-year age group and the smallest increase in the 55- to 64-year age group.

Meaning These findings suggest that despite difficulties in identifying autism in adults, there is a considerable and growing population of autistic adults among Medicaid enrollees, which may have future implications for the Medicaid system and understanding the needs of the autistic population.

Abstract

Importance The reported prevalence of autism in children has consistently risen over the past 20 years. The concurrent implications for the adult Medicaid system, which insures autistic adults due to low income or disability, have not been studied.

Objective To estimate the prevalence of adults identified as autistic in Medicaid claims data and to examine the prevalence by year, age, and race and ethnicity to understand enrollment patterns.

Design, Setting, and Participants This cohort study used data from a longitudinal Medicaid claims cohort of enrollees aged 18 years or older with a claim for autism at any point from January 1, 2011, to December 31, 2019, and an approximately 1% random sample of all adult Medicaid enrollees. The data were analyzed between February 22 and June 22, 2023.

Exposure Adults enrolled in Medicaid with a claim for autism.

Main Outcome and Measures Prevalence of autism per 1000 Medicaid enrollees for each year was calculated using denominator data from the Centers for Medicare & Medicaid Services weighted to nondisabled population demographic characteristics. Prevalence by race and ethnicity were calculated for study year 2019.

Results Across 9 years, 403 028 unique adults had autism claims in their Medicaid records (25.7% female, 74.2% male, 3.3% Asian, 16.8% Black, 12.2% Hispanic, 0.8% Native American, 0.8% Pacific Islander, 74.3% White, and 4.2% of multiple races). Across all ages, autism prevalence increased from 4.2 per 1000 enrollees in 2011 to 9.5 per 1000 enrollees in 2019. The largest increase over the 9 years was in the 25- to 34-year age group (195%), and the smallest increase was in the 55- to 64-year age group (45%). The prevalence of White enrollees was at least 2 times that of the prevalence of every other racial group in all age categories.

Conclusions and Relevance The study findings suggest that despite difficulties in identifying autism in adults, there is a considerable and growing population of autistic adults enrolled in Medicaid. As children on the autism spectrum become autistic adults, Medicaid is an important insurance provider for an increasing number of autistic adults and can be a valuable resource for understanding the health of the autistic population.

ADA Test Case Moot?

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

Kelsey Reichmann at Courthouse News Service:

The Supreme Court’s review of how disability accommodations are enforced throughout the country appeared to be dead on arrival Wednesday.

“This is like dead, dead, dead in all the ways it can be dead,” Justice Elena Kagan said.

The Barack Obama appointee added what the high court was being asked to do felt unjudicial.

“It doesn’t seem like something a court should do,” Kagan said.

Justice Samuel Alito had a similar view of the case, characterizing it as “dead as a door nail,” and suggesting a ruling in the case should be classified as an advisory opinion.

The case that might not be a case before the court on Wednesday concerns Deborah Laufer’s claim that Acheson Hotels violated the Americans with Disabilities Act by failing to provide accommodations information on its website. The merits of that argument were far from the justices’ concern, though, as the heart of the dispute was if Laufer could bring a suit in the first place.

...

In the time since the justices took up the case, the hotel updated its website to comply with the ADA and Laufer dismissed her suit against them. Acheson also no longer owns the Maine hotel.

These details left the justices with a dispute where both sides no longer had an interest in the final ruling.

Biden and Disability Law

 In The Politics of Autism, I discuss the congressional role in the issue.

Remarks by President Biden to Celebrate the Americans With Disabilities Act

You know, one of my first acts as a United States senator — I know I don’t look old enough to do it — (laughter) — but one of my first acts was I voted — I was a co-sponsor of the Rehabilitation Act, which was — (applause) — the first time in our nation’s history we declared in law what we knew to be true: that Americans with disabilities deserve dignity, respect, and an equal chance at the American Dream.

The Rehabilitation Act is one of the most consequential civil rights laws in our nation’s history, banning discrimination on the basis of disability by any entity funded by the federal government.
...
The Rehabilitation Act laid the groundwork for another landmark law celebrated today: the Americans with Disabilities Act.

Steny Hoyer led the charge in the House along with Major Robert — excuse me, Major Robert Owens and Tony Coelho — I don’t know, T- — (applause) — as well as Tom Harkin and Bob Dole. They led the fight in the Senate.

You know, I was enormously proud to be a senator — a Senate cosponsor.

Today, three decades after its passage, many of us can still recall the America where a person with disability could be denied service in a restaurant or a grocery store, where an employer could refuse to hire because of the disability.


And when we passed this law, we made a commitment to build an America for all Americans — for all Americans.

Perhaps most importantly, we did it together. This was a bipartisan bill, signed into law by a Republican president, George H.W. Bush, 33 years ago on this spot on the South Lawn of the White House.

Lalbor Department to Review Subminimum Wage Program

In The Politics of Autism, I discuss the employment of people on the autism spectrum  There is bipartisan support for ending the subminimum wage.

Taryn M. Williams at the Department of Labor:

At the Department of Labor, our North Star is building a more accessible and equitable workplace for all, including workers with disabilities. While we have made substantial progress towards fulfilling the promise of access and equity, there’s still room to go. We know that many workers with disabilities are still being paid wages far below the federal minimum wage under section 14(c) certificates. We have been urged by not just advocates but also by numerous oversight entities and advisory groups, ranging from the Government Accountability Office, the National Council on Disability, the U.S. Commission on Civil Rights, to the DOL’s own Advisory Committee on Increasing Competitive Integrated Employment, to carefully review the 14(c) program and prioritize competitive integrated employment.

And that is what we are going to do. The Department of Labor – led by the Office of Disability Employment Policy, the Wage and Hour Division, our Solicitor, and our policy office– is embarking on engaging stakeholders to ensure opportunities for competitive integrated employment and to move toward greater equity and economic security for workers with disabilities. We are launching a comprehensive review of the Section 14(c) program to re-examine its use and future viability. As part of this effort, we want to hear from all of you – and especially individuals with disabilities – about your experiences with the 14(c) program, and what changes are needed to expand equitable employment opportunities for people with disabilities. In the coming weeks we will be engaging with key organizations, stakeholders, and impacted workers directly on these important issues.

The Rehab Act and NDEAM are fundamentally about the notions of access and equity for people with disabilities. We believe that this historic anniversary is the right time to ask this question about the 14(c) program. We want to hear from you about how you have been impacted by changing laws and government policies, access to services and supports, and even shifting social views about what work opportunities people with disabilities are able to take on and in fact deserve. As our Acting Secretary said earlier this week at the White House Disability Policy Forum celebrating the 50th anniversary of the Rehabilitation Act of 1973, we need your thoughts, your ideas, and your partnership to do this right. I couldn’t agree more.

RFK Jr May Go Third Party

  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.

Aaron Pellish at CNN:

Environmental lawyer and 2024 presidential hopeful Robert F. Kennedy Jr. on Friday teased a “major announcement” in upcoming weeks amid speculation he is considering dropping his bid to primary President Joe Biden as a Democrat and instead running for president as an independent or on a third-party ticket.
...
News of the upcoming event, first reported by Mediaite, comes as the super PAC supporting Kennedy’s presidential bid has conducted national polling to gauge his viability in a hypothetical three-person race against Biden and former President Donald Trump, a person familiar with the polling told CNN.

...

In July, Kennedy, an anti-vaccine activist, met Libertarian Party Chair Angela McArdle at an event in Tennessee. They discussed their shared beliefs, including around vaccine mandates and pandemic-era shutdowns, and the two have been in touch since, McArdle told CNN Friday. She said she has not received a commitment from Kennedy to run as a Libertarian Party candidate.

...

At campaign events in Iowa, New Hampshire and South Carolina, Kennedy has attracted support from voters of both parties who are drawn to his views on Covid-19 and the coronavirus vaccine. A longtime vaccine skeptic, Kennedy founded the Children’s Health Defense, an organization that promotes discredited claims linking vaccines to autism, and has frequently promoted vaccine skepticism on the campaign trail. At campaign events, he also frequently criticizes corruption in both political parties and by private corporations and asset management firms, painting himself as an outsider candidate who can root out corruption in all forms.

National Disability Employment Awareness Month

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

October is National Disability Employment Awareness Month.