Project 2025 in 2025

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

According to the National Center for Education Statistics, 7.5 million children 3 to 21 years old received services under the Individuals with Disabilities Education Act in AY 2022-23.

About 980,000 of them were autistic, up from 498,000 in 2012-13.

The Trumpist Project 2025 would gut that law, wiping out protections for all those students.

During the campaign, Trump tried to deny any connection to Project 2025, but has since nominated Project 2025 collaborators to high office. One is Russell Vought, the nominee for the most crucial job in domestic policy, director of the Office of Management and Budget. Watch out when he issues the Trump budget.

I posted this piece during the fall. It is worth repeating.  Nothing that Trump has said or done since his election is inconsistent with it.

Buried deep inside Project 2025 is a bombshell that has gotten little attention: a radical proposal that threatens the education and future of millions of students with disabilities.

Right now, a kid with a disability such as autism can get an individualized, school-based set of services, including speech therapy, physical therapy, and occupational therapy. But under Project 2025 this set of services could go away.

You can find the proposal on page 326 of the Project 2025 transition playbook. It lays out an extreme change to the Individuals with Disabilities Education Act (IDEA): “Most IDEA funding should be converted into a no-strings formula block grant targeted at students with disabilities and distributed directly to local education agencies by Health and Human Service’s [sic] Administration for Community Living.”

That one sentence could upend lives and send students with disabilities backward a half-century.

To understand why it is so dangerous, consider the background of IDEA. This law provides federal funding for the education of children with disabilities; states that receive the funds must offer a free, appropriate public education to each eligible child. Before IDEA, public schools excluded about 1.8 million children with disabilities and gave only negligible help to millions more.

In the 49 years since the law’s passage, parents have fought for regulations and judicial rulings that shore up IDEA’s protections for their children. For instance, when a school district said that it only had to offer minimal services to an autistic student, his parents fought back. The Supreme Court agreed with them, ruling that IDEA required the district to do better than rock bottom.

Because of such advocacy, some 7.5 million students today receive individualized services. The system is far from perfect, but for many Americans, it has opened the door to fulfilling lives and productive careers. It’s good for students with disabilities, their families, and nearly every community.

Unlike the Americans with Disabilities Act, however, IDEA is not a civil rights law that applies across the board. Its requirements are conditions of federal aid — also known as “strings.”

When you cut the strings, you gut the law.

That is why the Project 2025 proposal is so reckless. This proposal doesn’t just threaten special education; it signals a broader assault on the federal protections that have safeguarded the rights of millions of vulnerable Americans for generations.

Parents have learned the hard way that they can seldom get the services their kids need unless they can cite a legal requirement — and even then, they’ve learned that relentless pressure is necessary to get their kids a fair shake.

Since 1980, the US Department of Education has overseen the implementation of IDEA. Project 2025 would shift that job to another department because it also proposes to eliminate the Department of Education. Let that sink in.

Trumpists insist the former president has nothing to do with this risky scheme. And now that people have started raising alarms about other aspects of Project 2025, he is denying any connection to it — which rings hollow with recent reporting on Trump’s embrace of Project 2025 before it was in the media spotlight.

In his denials, Trump sounds like a guilty defendant on Paternity Court.

No matter what he says about Project 2025 now, his political DNA is all over it: at least 140 people who worked in his administration also took part in drafting the document, and Trump himself was happy to rub elbows with the man behind it on at least one private jet.

Trump has not proposed any other IDEA agenda. His skimpy platform does not even mention the word disability. If Trump wins the 2024 election, Project 2025 will fill in the blanks.

Does Trump care that this proposal would endanger special education? Not likely. Trump has always despised people with disabilities. In talk show interviews, he repeatedly used the r-word — and Lordy, there are tapes. His former chief of staff confirmed last year that he did not want photographs with military amputees, complaining, “It doesn’t look good for me.” His cruel imitation of a disabled reporter became infamous during the 2016 campaign. And according to a recent account by his nephew, he has said that severely disabled people should “just die.”

Trump may dodge, deflect, and deny, but one truth is clear: his agenda lacks any compassion for the millions of students with disabilities for whom IDEA is a key contributor to supporting their education and their future.

Musk and Self-Diagnosis

In The Politics of Autism, I discuss autism history.  Some speculate that many famous innovators and scientists were on the spectrum.  Elon Musk identifies as autistic.

Stuart Vyse at Skeptical Inquirer:

On May 8, 2021, in an awkward opening monologue, Elon Musk created a small controversy when he claimed to be making history as the first person with Asperger’s to host Saturday Night Live. The next day, Marlow Stern of The Daily Beast pointed out that former cast member Dan Aykroyd has Asperger’s Syndrome and returned to host in 2003. As a secondary issue, the intelligencia were quick to point out that the Asperger’s diagnosis was eliminated in 2013 and blended into Autism Spectrum Disorder (American Psychiatric Association 2013), so more accurately Musk had autism or ASD. However, rarely mentioned in the aftermath was the origin of his diagnosis. According to his biographer Walter Isaacson (2023), Musk was never diagnosed by a qualified mental health professional. He diagnosed himself. And Musk is not alone. He is part of a growing do-it-yourself trend: self-diagnosis.

Study: 61.8m Autistic People in the World

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. c

 Elana Gotkine at MedicalXpress:

Damian Santomauro, Ph.D., from the University of Queensland in Archerfield, Australia, and colleagues conducted a systematic literature review to estimate the global prevalence and health burden of autism spectrum disorder.

The researchers found that in 2021, an estimated 61.8 million individuals were on the autism spectrum globally. The global age-standardized prevalence was 788.3 per 100,000 people, which was equivalent to 1,064.7 and 508.1 males and females with autism per 100,000 males and females, respectively.

Globally, autism spectrum disorder accounted for 11.5 million disability-adjusted life-years (DALYs), which was equivalent to 147.6 DALYs per 100,000 people. Age-standardized DALY rates varied from 126.5 to 204.1 per 100,000 people in Southeast Asia, East Asia, and Oceania and in the high-income super region, respectively. Across the lifespan, DALYs were evident, emerging for children younger than 5 years (169.2 DALYs per 100,000 people) and decreasing with age (163.4 and 137.7 DALYs per 100,00 people aged younger than 20 and aged 20 years or older, respectively). For people younger than 20 years, autism spectrum disorder was ranked within the top 10 causes of nonfatal health burden.

From: Damian F Santomauro et al, The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021, The Lancet Psychiatry (2024). DOI: 10.1016/S2215-0366(24)00363-8

Prevalence did not vary substantially over time. Studies reporting an increase in the prevalence of the autism spectrum have often relied on registries or administrative records to determine prevalence. Studies using random sampling or consistent active-case finding did not show this trend. This finding aligns with previous work suggesting autistic characteristics in the population have remained stable over time despite a rise in registered diagnoses.32 Nonetheless, the absence of temporal trends in our analysis should be interpreted with caution as we relied on a 15-year time window (reduced from 25 years) to model prevalence data. This time window might have limited our ability to explore temporal trends, but a further reduction was not possible because of data sparsity.

Autism spectrum disorder ranked within the top-ten causes of non-fatal health burden for young people (age <20 years), emphasising the need for early detection and developmental support for autistic people.3,4,33 Most epidemiological investigations into the autism spectrum have been predominantly centred on children and adolescents, leaving a gap in our understanding of the autism spectrum in adults. The prevalence and health burden of autism spectrum disorder persisted across the lifespan, beginning to decline from age 60 years. DisMod MR 2.1 estimated prevalence while also taking into consideration data available from other epidemiological parameters. In this case, with most of our raw prevalence data limited to younger cohorts, the age pattern in prevalence was informed by excess mortality data modelled by DisMod-MR 2.1 because of limited available prevalence data in adulthood. Because of limited data availability, all mortality data sourced from the systematic review relied on passive case finding (eg, from administrative records). This method might overestimate excess mortality for all autistic people, leading to an underestimation of prevalence in adulthood.

32. Lundström, S ∙ Reichenberg, A ∙ Anckarsäter, H ∙ et al.
Autism phenotype versus registered diagnosis in Swedish children: prevalence trends over 10 years in general population samplesBMJ. 2015; 350, h1961 Crossref Scopus (126)  PubMed Google Scholar
33. Peters-Scheffer, N ∙ Didden, R ∙ Korzilius, H ∙ et al. A meta-analytic study on the effectiveness of comprehensive ABA-based early intervention programs for children with autism spectrum disordersRes Autism Spect Disorder. 2011; 5:60-6  Crossref Scopus (0) Google Scholar 

 

The RFK Death Toll

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another 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 part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

At The Times of London, Samuel Lovett tells how RFK helped cause a deadly 2019 measles outbreak in Samoa:

Kennedy’s influence in Samoa took hold a year before the epidemic. In July 2018 two babies died after receiving improperly prepared vaccines, the result of human error. These deaths were soon picked up by antivax groups, including Kennedy’s Children’s Health Defence organisation, and used to question the safety of the measles-mumps-rubella (MMR) jab.

This disinformation, coupled with the temporary suspension of the country’s immunisation programme, drove down coverage rates. In 2018 only 31 percent of children under five were vaccinated, a fall from 60-70 percent in previous years.

The following summer Kennedy visited Samoa in a trip arranged by a local antivax activist and paid for by Children’s Health Defence. During the visit Kennedy challenged one health official on the safety of MMR vaccine and discussed vaccination “a limited amount” with the prime minister, according to The Guardian.

Dr Take Naseri, Samoa’s director-general of health, said: “He told me he thinks the data is not solid.”

During the epidemic, which killed 83 people and infected thousands, Kennedy and his acolytes spread false claims about its origins.

In a four-page letter to the prime minister he said the vaccine might be inadvertently spreading the virus in children and theorised about whether it had provoked “the evolution of more virulent measles strains”.

The outbreak was catastrophic. So many young children died, most of them under five, that New Zealand sent dozens of infant-sized coffins to Samoa. Foreign doctors were flown in to support overwhelmed hospitals. A lockdown was briefly ordered as schools closed and unvaccinated families marked their houses with red flags.

To this day Jackson does not know why Kennedy was invited to Samoa. His trip was never really publicised, she said.

But in her view there is no doubt of the impact. Jackson saw it on a almost daily basis when she visited overrun hospitals and co-ordinated the island’s vaccination programme, which involved working out how to reach the most inaccessible and poorest villages.

“There was a scarcity of resources, so we had a lot of challenges,” she said. “You were running against time to save the next person.”

Kennedy insists he bears no responsibility for what happened. “I had nothing to do with people not vaccinating in Samoa. I never told anybody not to vaccinate,” he said last year.

Josh Green, who vaccinated hundreds of people during the outbreak, and now serves as the governor of Hawaii, sees it differently. “RFK was absolutely responsible for destroying trust in vaccines in Samoa,” he said.

Musk, Aspie Supremacy, and Slurs

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including casual prejudice against disabled people.  

Elon Musk has said that he is autistic, so it is odd that he would use a variation of the r-word, a term that bigots throw against autistic people.

My tolerance for subtards is limited

— Elon Musk (@elonmusk) December 27, 2024

l

 Eric M. Garcia  at The Independent:

Back in September, an X/Twitter account known as Autism Capital posted a screenshot of a written theory that appeared to be taken from 4Chan. The theory postulated that only “high [testostrone] alpha males” and “aneurotypical people” can think freely and be trusted to know what is objectively true. That means “a Republic for high-status males is best for decision making,” the theory continued. Elon Musk, the X owner and Tesla executive, responded: “Interesting observation.”

Little wonder that Musk found such proclamations interesting. He has talked in public a number of times about having “Asperger’s syndrome” (a term that fell out of favor as researchers learned the extent of Hans Asperger’s collaboration with the Nazi regime’s child euthanasia program and one that hasn’t been used clinically since 2013.) The concept of “Aspie supremacy” — a term some disability rights advocates coined for the deeply problematic idea that people with autism spectrum disorder (ASD) who previously would be considered as having Asperger’s are superior to both neurotypical people and other autistic people — has been around for a while. But it’s gained traction in the past few years in some very online, very right-wing spaces.

UPDATE:

Elon Musk just agreed with a tweet calling MAGA followers the “retarded right” pic.twitter.com/h8BaHnn2I8

— PatriotTakes 🇺🇸 (@patriottakes) December 28, 2024

Antivaxxers Making Money

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another 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 part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.  He and his pals have made a lot of money from this stuff.

Brandy Zadrozny:

Del Bigtree, a leading voice in the anti-vaccine movement, brought in a record windfall last year for the nonprofit group he founded, according to the latest tax filings.

The Informed Consent Action Network, known as ICAN, reported $23 million in revenue for 2023, a 74% increase from the previous year. The group spent nearly $17 million on efforts including legal battles and anti-vaccine advocacy, an increase of about 25% from the year before.

The tax documents, obtained by NBC News from ICAN, show the increasing prominence and profitability of the anti-vaccine movement in the ongoing fight over vaccine policies and public health. The pandemic supercharged groups like ICAN, which reported about $3.5 million in revenue in 2019, expanding the audience interested in anti-vaccine content and growing the coffers of those who produce it. Numerous studies have found that vaccines are safe and save lives, and are not linked to autism, but that hasn’t stopped misinformation from spreading.

Revenue for Children’s Health Defense, the anti-vaccine organization founded by Robert F. Kennedy Jr., had been on the rise as well until last year, when it dropped more than 30%, to $16 million. This loss coincided with Kennedy taking a leave from his positions as chairman and chief litigation counsel to launch an unsuccessful presidential bid.

But ICAN’s revenue continued to grow, and Bigtree’s profile has risen. The former television producer and anti-vaccine filmmaker, whose organization was known for attention-grabbing stunts and filing freedom of information requests, became communications director for Kennedy’s third-party presidential campaign and advised Kennedy as he prepared for his potential role as secretary of Health and Human Services.

Bigtree and ICAN did not respond to requests for comment.

President Biden Signs Autism CARES

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

 Yesterday, President Biden signed the Autism CARES Act of 2024 into law.  A release from Rep. Chris Smith (R-NJ):

Comprehensive legislation authored by Rep. Chris Smith (R-NJ) to provide robust funding and enhanced support for Americans with autism was signed into law this week.

Smith’s Autism CARES Act of 2024 will provide more than $1.95 billion over five years for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA).

“At CDC, the funding will support ongoing developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention services; at NIH, the funding will drive research as well as the coordination of autism-related activities, including the Inter Agency Coordinating Committee (IACC),” Smith said during debate on the House Floor on December 16th.

“As the prime author of the Autism Cares Act of 2024 and previous iterations of the law in 2011, 2014, and 2019, I know this legislation will help make a huge difference in the lives of the millions of Americans with autism by providing robust funding for durable remedies as well as effective early detection and intervention services to allow them the highest quality of life possible,” Smith said.

“According to the CDC, 1 in 36 children in the United States—including 1 in 35 children in my home state of New Jersey—are on the autism spectrum,” said Smith.

“My legislation pursues critical research goals and focuses on responsive and effective interventions for the estimated 6.8 million individuals with autism—27 percent of whom, or over 1.8 million, are profoundly autistic,” Smith said.

Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—is expected to become law before the end of the year.

“I am pleased to help pass this bipartisan legislation, a bill I championed alongside Congressman Chris Smith (NJ-4), and send it to the President's desk. This bipartisan bill will provide vital funding to expand research and care for Americans with autism,” said Dr. Cuellar, a senior member of the House Appropriations Committee. “Through this bill, we continue important work in understanding the causes of autism, the best ways to treat autism, and incorporate the voices of those previously missed by research.”

Smith’s legislation has received strong support from the nation’s leading autism advocacy groups, including Autism New Jersey, Autism Speaks, the Autism Society, the Profound Autism Alliance, and the Association of University Centers on Disabilities.

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 will:

· Direct the National Institutes of Health (NIH) to research issues encountered by individuals and caregivers as they age, mental health concerns, issues related to aging, as well as co-occurring conditions and needs for supports and services, such as care necessary for physical safety and the prevention of self-injurious behavior;

· Increase the number of NIH Centers of Excellence to seven and ensure research reflects the entire population of individuals with autism spectrum disorder and is designed to address the full range of needs faced by individuals, including to ensure the physical safety and to promote the well-being of all Americans with autism;

· Include, for the first time, a professional bypass budget to provide the autism community with a comprehensive budget highlighting priority research areas and resources needed to advance quality of life improvements for all individuals with autism; and

· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs.

Smith, who has been a steadfast champion for the autism community for decades, said “it all started in September 1997 with Bobbie and Billy Gallagher from Brick Township and their indomitable commitment to help their two children—Austin and Alanna—and everyone else with autism.”

“We met several times and invited the CDC to Brick only to realize that federal autism programs were woefully inadequate—almost nonexistent,” said Smith, who noted he continues to plan and strategize with the couple to this day.

At Smith’s invitation, federal agencies came to Ocean County for an investigation and found that autism prevalence rates were high not only in Brick, but in nearby communities as well. In response, Smith authored the Autism Statistics, Surveillance, Research and Epidemiology Act, which was incorporated as Title I of the Children’s Health Act of 2000, authorizing grants and contracts for the collection, analysis and reporting of data on autism and pervasive developmental disabilities.

Causation

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

• Contrary to the lies of Trump and RFK Jr., vaccines do not cause autism.
• Genetics plays an important role.
• Much of the reported increase reflects greater awareness and broadening of diagnostic criteria.
• Beyond that, there is uncertainty about how much true prevalence has increased, and what might be causing such an increase.

Emily Baumgaertner at NYT:

More than 100 genes have been associated with autism, but the disorder appears to result from a complex combination of genetic susceptibilities and environmental triggers.

The C.D.C. has a large-scale study on the risk factors that can contribute to autism, and researchers have examined dozens of potential triggers, including pollution, exposure to toxic chemicals and viral infections during pregnancy.

Some research suggests that babies born to older parents — particularly an older father — may be at increased risk of autism. Other studies hint that premature birth or low birth weight could be associated with autism, which is often linked to high oxidative stress.

The idea that such factors could also be involved in the overall rise in autism is convincing to Juergen Hahn, a professor at Rensselaer Polytechnic Institute who studies the computational systems biology of autism, given that both the number of children surviving premature birth and the average age of new parents are rising.

But testing a hypothetical driver of autism would mean controlling for the endless list of other influences on early development and following the child well into adulthood, when some people now receive their diagnosis.

“These are very complicated studies to conduct, especially if you want statistical certainty, and there are no easy answers,” Dr. Hahn said. “Sometimes we just have to say we don’t know. And that always gives people room for speculation.”

...

Researchers also point to the influence of social media as “one of the biggest unrecognized factors driving the explosion of autism diagnoses,” Dr. Baron-Cohen said. Platforms like Reddit, he said, became a space “where people who might wonder if they or their child were autistic could communicate with each other and feel a new sense of belonging and identity,” he said.

Still, for Catherine Lord, a psychologist at the University of California, Los Angeles, who has developed diagnostic tools and longitudinal studies for autism, the math just isn’t working.

“Some of it is clearly from greater awareness and broader inclusion,” she said. But even if those are the biggest factors driving the surge, and even if biological and environmental factors are contributing as well, she said, “it seems a little far-fetched to think that all of these add up to the increase.”

She is confident, though, from copious data in both the United States and abroad, that heightened autism prevalence does not correspond to childhood immunizations.

“Whatever it is,” she added, “it’s not vaccines.”

Here is a long. growing, and probably incomplete 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
36. BPA
37. Brain inflammation
38. Maternal asthma
39. Infertility
40. Ultraprocessed foods
41. Household chemicals
42. Parental psychiatric disorders
43. Fluoride
44. Fatty acids in umbilical cord blood
45. Maternal inflammation during pregnancy

 

Trump Again Raises the Vaccine Theory

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another 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 part of the "Disinformation Dozen."

He is now Trump's nominee to head HHS.

At CNN, Eric Bradner and Aaron Pellish report on Trump's remarks to Turning Point USA:

Trump defended his controversial pick for Health and Human Services secretary, Robert F. Kennedy Jr. — and seemed to suggest he would allow Kennedy to probe for links between vaccines and autism, despite no evidence supporting the connection that Kennedy has long claimed exists.

Trump pointed to rises in diagnoses of autism, childhood cancer and chronic diseases, and said that “something’s wrong.”

“Together, we’re going to make America healthy again,” Trump said. “Something bad is happening.”

Kennedy’s long history of vaccine skepticism has been a source of focus for some Republican senators who are meeting with Trump’s Cabinet nominees ahead of confirmation hearings. Both Kennedy and Trump have in recent weeks sought to address those concerns — with Trump at a recent news conference describing himself as a “a big believer in the polio vaccine” and Kennedy saying he’s “all for” the vaccine.

Still, at the same news conference, Trump similarly noted higher autism rates, and said he wants Kennedy to “come back with a report as to what he thinks. We’re going to find out a lot.”

Trump on RFK Jr: 25 years ago, Autism, one in 10,000 children. Today, it's one in 36 children. Is something wrong? I think so. And Robert and, I.. we're going to figure it out. pic.twitter.com/SjQy9JDAjb

— Acyn (@Acyn) December 22, 2024

Material Hardship

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

Anderson, K. A., Radey, M., Bishop, L., Aguirre Mtanous, N. G., Koenig, J., & Shea, L. (2024). Material hardship and sources of support for autistic adolescents and their families. Autism, 0(0). https://doi.org/10.1177/13623613241304503

Lay abstract:

This exploratory study used the Future of Families and Child Wellbeing Study (FFCWS) to compare the financial well-being of families of adolescents with and without autism. Recognizing the gap in autism research, which predominantly measures financial well-being through household income, this study employed a multidimensional approach, including indicators of assets, material hardships, and both formal and informal safety net access. We found that families with autistic adolescents experienced greater financial instability, including a higher likelihood of substantial income drops and bankruptcy. Despite similar access to food assistance programs, food insecurity was notably higher among these families, especially in the lowest income brackets where nearly all families utilized food assistance. Furthermore, material hardship prevalence (46.4%) exceeded income poverty (29.8%), among families with autistic adolescents. A substantial proportion of middle- to high-income families also experienced hardships, had no assets, and lacked connection to safety net programs, suggesting that income-based metrics may not fully capture the financial challenges families face. The findings highlight the need for policies that acknowledge the broader financial needs of families with autistic adolescents, underscoring the inadequacies of current support systems.

From the article:

Our study found significant financial instability in families with autistic adolescents, who faced a higher likelihood of substantial income drops and were almost twice as likely to declare bankruptcy compared with families with non-autistic adolescents. Challenges uniquely exacerbated by the demands of autism care, including employment disruptions and high service expenditures, may contribute to the greater risk of experiencing substantial income drops and increased likelihood of bankruptcy, especially for single-parent households (McAuliffe et al., 2017). Despite these challenges, these families reported less access to liquid assets, such as the ability to secure loans or cosigners, compared with their counterparts. This economic volatility underscores the critical need for policies focused on asset accumulation and strengthening informal support networks to better support these families’ financial stability. Interestingly, while high food insecurity remains a severe issue, families with autistic adolescents do not face greater risks regarding bill-paying and utility hardships compared with other families. This difference may be linked to the higher rates of SSI/SSDI receipt among autistic adolescents compared with those without autism, despite families of autistic adolescents receiving lower annual payments than their non-autistic counterparts. However, the high prevalence of food insecurity amid low bill-paying hardships suggests a targeted need for programs specifically enhancing food access.

The Vaccine Theory: Gateway to Grift

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.  

Catherine Tan at Time:

As a medical sociologist, I spent three years studying parents of autistic children, practitioners, and researchers who are convinced that early childhood vaccines cause autism. Like Kennedy, they believe that children are born non-autistic and then made autistic by vaccines and other environmental triggers.

This belief tragically portrays autistic people as having been born "typical" but then "broken." Although debunked, this causal theory is incredibly appealing to families because it suggests that autism can be reversed with alternative and experimental treatments that address vaccine "injury." Believing in a vaccine-autism link, parents access an ever-expanding market of questionable products that claim to mitigate autistic symptoms—specialized diets, supplements, and riskier treatments, like chelation and parasite therapy. For these consumers, the hope of autism “recovery” depends on vaccines causing autism.

Poor Oversight in Minnesota

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.   Scams plague the world of autism. Some involve shady or abusive providers.

James Walsh at The Minneapolis Star-Tribune:

To care providers, advocates and parents of children with autism, the development of the Early Intensive Developmental and Behavioral Intervention (EIDBI) health care program in Minnesota is so promising and so long-awaited, it’s no wonder its growth has been explosive.

But because of that surge of interest in the program, which serves people younger than 21 with autism spectrum disorder, and the lack of oversight, advocates and providers weren’t completely surprised by the revelations last week that the FBI is investigating alleged fraud at two — and possibly more — EIDBI centers.

“The state was interested in providing access to needed services [and] equity-based access to long-underserved communities,” said Eric Larsson, executive director of clinical services at Lovaas Institute Midwest in Minneapolis. “And, if everyone follows the rules, there’s no problem. Not everyone followed the rules.”

The program is funded by the state and federal government. Since 2017, the state reported nearly $700 million in Medicaid EIDBI reimbursements. That includes nearly $229 million in 2024 payments through Nov. 27. At the same time, the number of EIDBI providers who diagnose and treat people with autism spectrum disorder has increased from 41 in 2018 to 328 last year.

Last week, the FBI raided St. Cloud and Minneapolis autism centers as part of an investigation it said revealed “substantial evidence” of millions of dollars in fraudulent Medicaid claims. No charges have been filed yet.

Passage of Autism CARES

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

A December 16 release from Rep. Chris Smith:

Comprehensive legislation authored by Rep. Chris Smith (R-NJ) to provide robust funding and enhanced support for Americans with autism is now headed to the President’s desk to be signed into law after winning overwhelming support in a vote (374-15) on the House Floor today.

Smith’s Autism CARES Act of 2024—which was approved by the Senate in late November—will provide more than $1.95 billion over five years for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA).

“At CDC, the funding will support ongoing developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention services; at NIH, the funding will drive research as well as the coordination of autism-related activities, including the Inter Agency Coordinating Committee (IACC),” Smith said during debate on the House Floor.

“As the prime author of the Autism Cares Act of 2024 and previous iterations of the law in 2011, 2014, and 2019, I know this legislation will help make a huge difference in the lives of the millions of Americans with autism by providing robust funding for durable remedies as well as effective early detection and intervention services to allow them the highest quality of life possible,” Smith said.

“According to the CDC, 1 in 36 children in the United States—including 1 in 35 children in my home state of New Jersey—are on the autism spectrum,” said Smith.

“My legislation pursues critical research goals and focuses on responsive and effective interventions for the estimated 6.8 million individuals with autism—27 percent of whom, or over 1.8 million, are profoundly autistic,” Smith said.

Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—is expected to become law before the end of the year.

“I am pleased to help pass this bipartisan legislation, a bill I championed alongside Congressman Chris Smith (NJ-4), and send it to the President's desk. This bipartisan bill will provide vital funding to expand research and care for Americans with autism,” said Dr. Cuellar, a senior member of the House Appropriations Committee. “Through this bill, we continue important work in understanding the causes of autism, the best ways to treat autism, and incorporate the voices of those previously missed by research.”

Smith’s legislation has received strong support from the nation’s leading autism advocacy groups, including Autism New Jersey, Autism Speaks, the Autism Society, the Profound Autism Alliance, and the Association of University Centers on Disabilities.

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 will:

· Direct the National Institutes of Health (NIH) to research issues encountered by individuals and caregivers as they age, mental health concerns, issues related to aging, as well as co-occurring conditions and needs for supports and services, such as care necessary for physical safety and the prevention of self-injurious behavior;

· Increase the number of NIH Centers of Excellence to seven and ensure research reflects the entire population of individuals with autism spectrum disorder and is designed to address the full range of needs faced by individuals, including to ensure the physical safety and to promote the well-being of all Americans with autism;

· Include, for the first time, a professional bypass budget to provide the autism community with a comprehensive budget highlighting priority research areas and resources needed to advance quality of life improvements for all individuals with autism; and

· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs.

Smith, who has been a steadfast champion for the autism community for decades, said “it all started in September 1997 with Bobbie and Billy Gallagher from Brick Township and their indomitable commitment to help their two children—Austin and Alanna—and everyone else with autism.”

“We met several times and invited the CDC to Brick only to realize that federal autism programs were woefully inadequate—almost nonexistent,” said Smith, who noted he continues to plan and strategize with the couple to this day.

At Smith’s invitation, federal agencies came to Ocean County for an investigation and found that autism prevalence rates were high not only in Brick, but in nearby communities as well. In response, Smith authored the Autism Statistics, Surveillance, Research and Epidemiology Act, which was incorporated as Title I of the Children’s Health Act of 2000, authorizing grants and contracts for the collection, analysis and reporting of data on autism and pervasive developmental disabilities.