IACC Summary of Advances in Autism Research

  In The Politics of Autism, I discuss the Inter-Agency Autism Coordinating Committee and research priorities.

From the Interagency Autism Coordinating Committee 

The Interagency Autism Coordinating Committee (IACC) has released its 2022 Summary of Advances in Autism Research. This publication provides short, plain language summaries of the top 20 advances in autism biomedical and services research selected by members of the IACC. In addition, the IACC has released an accompanying easy-read version that summarizes the full publication in a briefer, more accessible format.

The 20 studies selected for 2022 highlight potential ways to improve early screening and diagnosis of autism, including through the use of telehealth, and insight into brain differences that may contribute to autism and impact social communication, language development, and sensory processing. The studies also improve our understanding of disparities between autistic adults from different racial and ethnic backgrounds. In addition, a study using data from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network found significant racial and ethnic disparities in the receipt of early intervention services. However on a positive note, a separate ADDM study found that the number of U.S. children identified early in life has increased greatly since 2002, providing greater opportunity for the receipt of early intervention services and supports. Lastly, several studies selected for the Summary of Advances investigate important lifespan issues such as disruptions in Medicaid services, vocational outcomes, and differences in the prevalence of co-occurring conditions between autistic individuals diagnosed as children versus those diagnosed as adults.

Articles in the Summary of Advances are grouped according to the topics represented by the seven Questions of the 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy. Citations for the articles selected for the Summary of Advances, as well as a complete listing of nominated articles, are included in the publication. The 2022 Summary of Advances meets the requirements of the Autism Collaboration, Accountability, Research, Education, and Support (Autism CARES) Act of 2019.

Among the research findings that the publication summarizes:

• Less than half of the children in New Jersey diagnosed with autism between 2006 and 2016 received early intervention services, and significant socioeconomic and racial/ethnic disparities were observed, underscoring the urgency to address disparities and increase access to early intervention. 
•  Pediatricians can identify early mental health concerns in school-age children with autism through screening during well-child appointments, and opp
•  International survey results indicate several barriers, particularly communicating with providers and sensory challenges in waiting rooms, that may affect autistic adults in scheduling and completing primary care visits, leading to worse health outcomes. 
• Factors measured in childhood such as IQ, adaptive functioning, and degree of autistic traits may predict levels of independence, employment and education, and, to a lesser extent, physical health in autistic adults. 
• Autistic people diagnosed as adults are more likely to have co-occurring psychiatric conditions than those diagnosed as children, highlighting the importance of mental health supports across the lifespan and the need for research on how timing of diagnosis affects well-being. 
• Work readiness skills (e.g., adaptability, success in daily routines) may improve employment outcomes for autistic adults. 
• Medicaid data suggest that co-occurring health conditions among autistic adults, which occur more often than in non-autistic peers, differ based on race and ethnicity. 
• Lack of lifelong Medicaid coverage for autistic adults in many states leads to higher rates of coverage loss and lower re-enrollment compared to non-autistic peers with intellectual disabilities. 
• The number of autistic children identified early increased substantially between 2002 and 2016 in the United States, though racial and ethnic disparities remained; analyses suggest median age should not be used to measure progress. 

Complexity of Services

Uncertainty and complexity are major themes of The Politics of Autism.

Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country."

The U.S. Department of Health and Human Services (HHS) has released the 2022 Report to Congress on Supportive Services for Individuals with Autism. This report was requested by the U.S. House of Representatives Committee on Appropriations in House Report 117-96.

From pp. 76-77 of the report:

The complexity of the supportive services landscape points to one important area of need: family navigation supports to help families identify and coordinatecare among the various providers, service types, and forms of coverage. Services are often fragmented among many different providers and in some cases, families may not be aware of the types of supports that are available to them. Families who are already facing significant functional impairments and disabilityassociated life stressors may have to shoulder additional burden of navigating complicated gatekeeping requirements before even identifying whether appropriate supports and services are actually available in their community. In some instances, providers may receive conflicting guidance on whether or not they are able to serve a person with autism, or if they should be referred to other services specific for those with DD. As a result, autistic individuals’ co-occurring conditions, such as mental health conditions, may go unaddressed. Family navigation services have been found to be effective in improving access and adherence to services over time,371 but tools designed specifically for families following a diagnosis of autism are currently limited.372 To be offered starting in October 2022, a new Medicaid health home benefit for children with medically complex conditions is a step towards meeting this need. This benefit will help state Medicaid programs provide person-centered care management, care coordination, and patient and family support. Fragmentation of the service system may be further improved by enhanced “wrap-around” or “continuum of care” services. Wrap-around services refer to the practice of providing all the various services that anindividual may need over time across different areas in their life (e.g., home, school, community). Wrap-around service delivery is a team-based, collaborative case management approach where a number of professionals work together to provide a holistic program of supports. This coordinated approach can help to improve outcomes for individuals and their families.373,374

Autistic Person Is MD Coordinator of Autism Strategy

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  

Maya Lora at The Balitmore Sun:

When Maryland publishes its plan for addressing the needs of autistic people next year, it will largely be due to the efforts of one of the community’s own.

Victoria Rodríguez-Roldán is an autistic, Latina trans woman with over a decade of combined experience in the government and nonprofit sectors, according to her biography, who has written for academic journals on the intersection of autistic and LGBTQ+ identities.

In August, Democratic Gov. Wes Moore appointed Rodríguez-Roldán as the state coordinator for autism strategy for the Maryland Department of Disabilities, which recommended Rodríguez-Roldán for the position after a national search.

“We were really impressed with her work in government and nonprofits and really advocating policy changes for many underserved communities,” Secretary Carol Beatty said, adding that one of Rodríguez-Roldán’s most important qualifications is her lived experience. “Our department feels very strongly in how important representation is to the disability community.”

...

According to her LinkedIn, Rodríguez-Roldán previously chaired the board of directors for the Autistic Self Advocacy Network, a Washington, D.C., based organization run by autistic adults. Zoe Gross, the director of advocacy for the network, said when she saw Maryland was looking for a state coordinator for autism policy, she “was really hoping that it would go to an autistic person” because the conversation around autism has been long-dominated by family members of autistic people or non-autistic professionals working in the field of autism.

Vote the Spectrum

 In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."

Bridget Dowd at Fronteras:

In 2020, voting participation among people with disabilities lagged nearly 6 points behind the rate for non-disabled people, according to research from Rutgers University.

That’s why an Arizona non-profit is launching a new initiative to get people with disabilities registered for 2024.

First Place Arizona offers supportive housing for adults with autism, Down Syndrome and other neurodiversities. Now it’s launching a program called Vote the Spectrum.

First Place founder Denise Resnik said the goal is to register 10,000 individuals with autism and/or intellectual/developmental disabilities (A/I/DD) and those who support them to vote.

“We want to recognize that people with autism and disabilities are valued, integrated members of our communities and we want to create more inclusive communities and we believe a big part of that is having a voice and a vote," she said.

First Place is also partnering with the Secretary of State’s office and the Maricopa County Recorder’s office to hold mock election days so people know what to expect at the voting booth.

Disability Policy and Family Ties

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

I have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:

The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.

At NYT, Kayla Guo writes that family experience with disability can foster bipartisanship on disability issues. She focuses on Senators Maggie Hassan (D-NH) and Eric Schmitt (R-MO)

They have little in common in terms of politics or legislative priorities. But both have children with disabilities: Ms. Hassan’s son, Ben, 35, has severe cerebral palsy. Mr. Schmitt’s son, Stephen, 19, is nonverbal and has tuberous sclerosis, epilepsy and autism.

“You have that special bond that is sometimes hard to explain to other people,” Mr. Schmitt said of his relationship with Ms. Hassan. “We may not vote together on hardly anything, but there’s a deeper connection.”

At a moment of stark polarization across the nation, Mr. Schmitt and Ms. Hassan are among several lawmakers in Congress with disabled children who have bonded over that shared circumstance. The common ground these lawmakers have found is a reminder of the human elements of serving in Congress: the time spent away from family, the importance of relationships on Capitol Hill and the personal perspectives lawmakers bring with them to Washington that shape their political and policy agendas.

“It’s something that you hear people in public office say a lot, but we actually have a lot in common,” Ms. Hassan said in an interview. “We have similar family experiences. We’re struggling with a lot of the same things, and I hope Americans will remember that and stay focused on it.”

...

 In the House, Representatives Cathy McMorris Rodgers of Washington and Pete Stauber of Minnesota, both Republicans, have children with Down syndrome. Ms. McMorris Rodgers founded the Congressional Down Syndrome Caucus after her son, Cole, 16, was born.

In the House, Representatives Cathy McMorris Rodgers of Washington and Pete Stauber of Minnesota, both Republicans, have children with Down syndrome. Ms. McMorris Rodgers founded the Congressional Down Syndrome Caucus after her son, Cole, 16, was born.

“You almost feel like you’re family because there’s an understanding, a shared experience,” Ms. McMorris Rodgers said about other lawmakers with disabled children. “It definitely builds a relationship. And there’s an immediate desire to work together.”

Mr. Stauber, who had a Barbie doll with Down syndrome displayed in his Washington office, teared up during an interview as he recalled how his son Isaac, 21, would greet him every day when he got home from work as a police officer. Isaac, one of Mr. Stauber’s six children, has “severe and profound” Down syndrome. He graduated from high school in the spring, and, like his father, loves ’70s and ’80s rock music.

“There are colleagues on the other side of the aisle that politically I may not agree with,” Mr. Stauber said. “But there is no daylight between us in supporting our special needs community.”

He added: “We’ll give each other a hug when we need it. It’s a good common ground.”

 

Antivaxxers Gain Ground in State Legislatures

 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.

Before his presidency, Trump pushed the idea, hard and repeatedly.

Unfortunately, other Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

Lauren Weber at WP:

A wave of lawmakers who oppose vaccine requirements are winning elections for state legislatures amid a national drop in childhood vaccination rates and a resurfacing of preventable deadly diseases.

The victories come as part of a political backlash to pandemic restrictions and the proliferation of misinformation about the safety of vaccines introduced to fight the coronavirus.

In Louisiana, 29 candidates endorsed by Stand for Health Freedom, a national group that works to defeat mandatory vaccinations, won in the state’s off-year elections this fall.

...

Louisiana’s shift is a sign of the growing clout of the anti-vaccine movement in the nation’s statehouses as bills that once died in committee make it onto the legislative floor for a vote.

Since spring, Tennessee lawmakers dropped all vaccine requirements for home-schooled children. Iowa Republicans passed a bill eliminating the requirement that schools educate students about the HPV vaccine. And the Florida legislature passed a law preemptively barring school districts from requiring coronavirus vaccines, a move health advocates fear opens the door to further vaccine limitations.

...

In Michigan, the normalization of anti-vaccine views is also unfolding. Eleven lawmakers recently honored discredited anti-vaccine activist and former physician Andrew Wakefield, who is responsible for the retracted research falsely linking autism to vaccines. Nine of those legislators were elected after the pandemic began, including Angela Rigas, a hairdresser ticketed for protesting pandemic mandates at the state capitol.

...

At a November conference held by Children’s Health Defense, an anti-vaccine group founded by Robert F. Kennedy Jr., a Michigan legislative aide cheered Rigas and her colleagues for taking a stand.

The Story Behind a"Whopper of the Year"

 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 for president as an independent. 

Katie Sanders, of PolitiFact, tells WMUR-TV (Manchester NH) how PolitiFact came to identify RFK Jr.'s conspiracy campaign as one of its "Whoppers of the Year."

 

Caregivers of Autistic Adults Face Red Tape

 In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Samara M. Wolpe, Amanda R. Johnson, Sunny Kim have an article at The Journal of Autism and Developmental Disorders titled "Navigating the Transition to Adulthood: Insights from Caregivers of Autistic Individuals." They conducted ten semi-structured interviews with caregivers of autistic young adults focused on transition to adulthood.

The difficulty of locating appropriate services for their child was a frequently expressed sentiment among participants. Many participants expressed the sentiment that, even when they found a seemingly suitable service that they thought would benefit their child, there was so much bureaucratic red tape that they were unable to obtain the service in time to use it and spent much of their free time fighting with service coordinators or attempting to get through to service professionals. One parent best summarized the experiences of wading through the restrictions put in place to limit access to services:

“It's a constant battle with Regional Center to get anything that you know benefits your kid. It’s so hard because they control everything, so you have to be polite… it's this constant churning of emotion because you want more for your kid and then you also understand why it's hard to get it, so there's this constant feeling like you're always in battle.” (Natalie)

Additionally, parents expressed frustration with navigating the Regional Center’s vendoring system. One participant stated:

“It’s so exhausting for the families, and then there's so much red tape… For example, they publish their list of vendors, but it's alphabetized, and for consumers of all age ranges for example, birth to 60 … well that's not helpful! I don’t need to know the name of the vendor. I need to know which vendors offer Adult Services, and what services they offer.” (Natalie)

Even those parents and caregivers who are able to get in touch with Regional Center coordinators and add themselves to the waitlist reported difficulty actually obtaining services. One parent (Liza) explained, “He's still living at home and we're in the process of trying to get him into supportive living, you know, we have an agency that agreed to work with us, but everybody's having a really hard time finding staff now so they're long waiting lists.” Even when services have been identified and the organization has agreed to provide the service, families still recalled waiting inordinate amounts of time to have the promised service come to fruition.

The Luck of Donald Triplett

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

At NYT, Maggie Jones remembers Donald Triplett.  The first person to have a formal diagnosis of autism, Triplett passed away this year.  

His mother was loving and determined, and she was from a prominent family in Forest, Miss. Her father was a founder of a local bank. Beamon was a top lawyer. They had money, and they had connections. In his law office soon after Donald came home, Beamon dictated a 33-page letter about his son’s medical and psychological history, his behaviors, aptitudes and challenges, to Dr. Leo Kanner, one of the world’s leading child psychiatrists, at Johns Hopkins Hospital.

Kanner met with the Tripletts and spent two weeks observing Donald, whose history and constellation of behaviors didn’t fit anything from the textbooks or the patients he had treated. Over the next few years, Kanner saw 10 more children who were similar to Donald in their “powerful desire for aloneness and sameness,” Kanner wrote. His article on what became known as autism was published in April 1943. Donald T. was Case No. 1: the first child formally diagnosed with the disorder.

Back home, Donald’s mother had pushed the public elementary school to allow him to attend, as Caren Zucker and John Donvan detail in their book, “In a Different Key: The Story of Autism.” He eventually graduated from high school and went on to a nearby college.

That was in stark contrast to the outcomes for many others at the time. There was no federal legislation mandating that children with disabilities had the right to public education until the 1970s. It would take years longer for the public to understand, through writers like Temple Grandin, that many people with autism had particular talents and intelligences and that the disorder was not rare. In the United States today, about one in 36 children have been identified with autism spectrum disorder, according to the C.D.C.

Donald Triplett had something else going for him.  He was white.  If he had grown up as a poor black child in 1940s Mississippi, his outcome would have been grim. 

Measles Coming Back

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

Michael Hiltzik at LAT:

Forecasting the future is difficult. But here’s an easy prediction: The anti-vaccination movement in the U.S. and globally is going to result in the deaths of more children.

This grim portent comes to us courtesy of UNICEF, which is reporting that 30,601 confirmed cases of measles have been reported in Europe and Central Asia this year through Dec. 5.

That’s up from 909 cases in those regions in 2022, or an increase of 3,266%.

...

It doesn’t take a very large decline in vaccine coverage to spur a surge in disease incidence. Consider the record in Britain. Through 1997, about 91% of British schoolchildren had received the measles/mumps/rubella (MMR) vaccine.

In 1998, the Lancet, a then-respected British medical journal, published a notorious article claiming a link between the MMR vaccine and autism, and by 2004 the vaccine uptake had fallen to 80%. Measles cases soon surged from an average of about 100 a year through 2005 to 1,280 in 2008 and 1,920 in 2012. By then the vaccination rate had begun to recover, but as of last year it was still below 90%.

That article, by the way, was fully retracted by the Lancet in 2010 and its principal author, Andrew Wakefield, stripped of his medical license. He has since surfaced in the U.S. as a star of the domestic anti-vaccine movement, rubbing shoulders with Kennedy and his gang.

Anna A. Minta and colleagues have an article at MMWR titled "Progress Toward Measles Elimination — Worldwide, 2000–2022" Abstract:

Measles is a highly contagious, vaccine-preventable disease that requires high population immunity for transmission to be interrupted. All six World Health Organization regions have committed to eliminating measles; however, no region has achieved and sustained measles elimination. This report describes measles elimination progress during 2000–2022. During 2000–2019, estimated coverage worldwide with the first dose of measles-containing vaccine (MCV) increased from 72% to 86%, then declined to 81% in 2021 during the COVID-19 pandemic, representing the lowest coverage since 2008. In 2022, first-dose MCV coverage increased to 83%. Only one half (72) of 144 countries reporting measles cases achieved the measles surveillance indicator target of two or more discarded cases per 100,000 population in 2022. During 2021–2022, estimated measles cases increased 18%, from 7,802,000 to 9,232,300, and the number of countries experiencing large or disruptive outbreaks increased from 22 to 37. Estimated measles deaths increased 43% during 2021–2022, from 95,000 to 136,200. Nonetheless, an estimated 57 million measles deaths were averted by vaccination during 2000–2022. In 2022, measles vaccination coverage and global surveillance showed some recovery from the COVID-19 pandemic setbacks; however, coverage declined in low-income countries, and globally, years of suboptimal immunization coverage left millions of children unprotected. Urgent reversal of coverage setbacks experienced during the COVID-19 pandemic can be accomplished by renewing efforts to vaccinate all children with 2 MCV doses and strengthening surveillance, thereby preventing outbreaks and accelerating progress toward measles elimination.

RFK Jr. and Whoppers of the Year

 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 for president as an independent. 

At FactCheck.org,  D'Angelo Gore, Lori Robertson and Robert Farley list RFK Jr.'s misinformation campaign as one of the"Whoppers of the Year."

RFK Jr.’s misinformation campaign. This year, after announcing his bid for the presidency, Robert F. Kennedy Jr. took his yearslong effort to spread misinformation about vaccines and health to the campaign trail. Now running as an independent, Kennedy has repeated so many false and misleading claims to voters that we ran a three-part series on what he gets wrong.

One of his most common falsehoods is that vaccines “are the only medical product that is not safety-tested prior to licensure.” All vaccines undergo safety testing prior to authorization or approval. He has continued to push the debunked claim that vaccines cause autism — despite extensive scientific study of childhood vaccines that has found no connection to autism. And then there are his distortions of the COVID-19 pandemic and the vaccines. He falsely said that SARS-CoV-2, the virus that causes COVID-19, may have been “ethnically targeted” to “attack Caucasians and Black people,” while Ashkenazi Jews and Chinese people are the “most immune” to the disease. Kennedy also has advocated ivermectin and hydroxychloroquine as effective treatments for COVID-19, contrary to several large, randomized controlled trials that have found no benefits for COVID-19 patients receiving the medications.

AI, Retinal Photographs, and Autism Screening

In The Politics of Autism, I discuss the evaluation and diagnosis of young children.  Screening is an important part of the process.

Jae Han Kim and colleagues have a JAMA Network Open article titled "Development of Deep Ensembles to Screen for Autism and Symptom Severity Using Retinal Photographs."

Question Can deep learning models screen individuals for autism spectrum disorder (ASD) and symptom severity using retinal photographs?

Findings In this diagnostic study of 1890 eyes of 958 participants, deep learning models had a mean area under the receiver operating characteristic curve of 1.00 for ASD screening and 0.74 for symptom severity. The optic disc area was also important in screening for ASD.

Meaning These findings support the potential of artificial intelligence as an objective tool in screening for ASD and possibly for symptom severity using retinal photographs.

Abstract

Importance Screening for autism spectrum disorder (ASD) is constrained by limited resources, particularly trained professionals to conduct evaluations. Individuals with ASD have structural retinal changes that potentially reflect brain alterations, including visual pathway abnormalities through embryonic and anatomic connections. Whether deep learning algorithms can aid in objective screening for ASD and symptom severity using retinal photographs is unknown.

Objective To develop deep ensemble models to differentiate between retinal photographs of individuals with ASD vs typical development (TD) and between individuals with severe ASD vs mild to moderate ASD.

Design, Setting, and Participants This diagnostic study was conducted at a single tertiary-care hospital (Severance Hospital, Yonsei University College of Medicine) in Seoul, Republic of Korea. Retinal photographs of individuals with ASD were prospectively collected between April and October 2022, and those of age- and sex-matched individuals with TD were retrospectively collected between December 2007 and February 2023. Deep ensembles of 5 models were built with 10-fold cross-validation using the pretrained ResNeXt-50 (32×4d) network. Score-weighted visual explanations for convolutional neural networks, with a progressive erasing technique, were used for model visualization and quantitative validation. Data analysis was performed between December 2022 and October 2023.

Exposures Autism Diagnostic Observation Schedule–Second Edition calibrated severity scores (cutoff of 8) and Social Responsiveness Scale–Second Edition T scores (cutoff of 76) were used to assess symptom severity.

Main Outcomes and Measures The main outcomes were participant-level area under the receiver operating characteristic curve (AUROC), sensitivity, and specificity. The 95% CI was estimated through the bootstrapping method with 1000 resamples.

Results This study included 1890 eyes of 958 participants. The ASD and TD groups each included 479 participants (945 eyes), had a mean (SD) age of 7.8 (3.2) years, and comprised mostly boys (392 [81.8%]). For ASD screening, the models had a mean AUROC, sensitivity, and specificity of 1.00 (95% CI, 1.00-1.00) on the test set. These models retained a mean AUROC of 1.00 using only 10% of the image containing the optic disc. For symptom severity screening, the models had a mean AUROC of 0.74 (95% CI, 0.67-0.80), sensitivity of 0.58 (95% CI, 0.49-0.66), and specificity of 0.74 (95% CI, 0.67-0.82) on the test set.

Conclusions and Relevance These findings suggest that retinal photographs may be a viable objective screening tool for ASD and possibly for symptom severity. Retinal photograph use may speed the ASD screening process, which may help improve accessibility to specialized child psychiatry assessments currently strained by limited resources.

Judge Nixes Tylenol Cases

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

If you listen to Sirius XM, you may have heard radio ads about a class action lawsuit alleging that acetaminophen causes it.

But there is a very long and growing list of other correlates, risk factors, and possible causes that have been the subject of serious studies.

 Jeff Feeley at Bloomberg:

Kenvue Inc., a Johnson & Johnson spinoff, won’t have to face lawsuits alleging prenatal exposure to over-the-counter painkiller Tylenol caused autism after a judge rejected the scientific evidence behind the cases.

US District Judge Denise Cote in Manhattan concluded Monday that plaintiffs in more than 400 suits accusing Kenvue and other makers and sellers of acetaminophen relied on flawed science in seeking to prove an increased risk of developmental issues in babies. The ruling effectively kills a consolidation of the cases before Cote.

Kenvue shares were up nearly 5% in Tuesday morning trading.

In her pretrial ruling, Cote found that plaintiffs’ scientific experts couldn’t show legitimate links between Tylenol and autism attention-deficit problems or hyperactivity, making the cases legally unsustainable. The experts didn’t use a “reliable application of scientific methods” in accessing the causal links between the drug and the ailments, Cote concluded in a 148-page ruling.

From the ruling: "the plaintiffs do not have admissible evidence to demonstrate that prenatal exposure to acetaminophen causes either ASD or ADHD in offspring."

Trump, Autism, and Conspiracy Theory

 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.

Before his presidency, Trump pushed the idea, hard and repeatedly.

Unfortunately, other Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

The anti-vax movement has a great deal of overlap with MAGA, QAnon, and old-school conspiracy theory. 

Caitlin Owens at Axios:

Driving the news: Trump's comments about drugmakers, posted in policy proposals and videos on his campaign website, have largely flown under the radar as his campaign speeches have doubled down on extreme rhetoric, like his use of anti-immigrant language and praise of foreign authoritarians over the weekend.

Details: One of the "Agenda47" proposals on Trump's campaign website — "Addressing Rise of Chronic Childhood Illnesses" — cites an "unexplained and alarming growth in the prevalence of chronic illnesses and health problems, especially in children."  [The next line: "We’ve seen a stunning rise in autism, auto-immune disorders, obesity, infertility, serious allergies, and respiratory challenges."] Trump in a June video that was also posted to Truth Social questions whether the food we eat, environmental toxins, or the "over-prescription of certain medications" is contributing to this increase.

• "Too often, our public health establishment is too close to Big Pharma —they make a lot of money, Big Pharma — big corporations, and other special interests, and does not want to ask the tough questions about what is happening to our children's health," Trump said in the video.
• "If Big Pharma defrauds American patients and taxpayers or puts profits above people, they must be investigated and held accountable," he said.
• Trump goes on to call for a "a special Presidential Commission of independent minds who are not bought and paid for by Big Pharma" to investigate the rise in chronic illness.

The intrigue: Trump's language around childhood illness is reminiscent of Robert F. Kennedy Jr., a prominent vaccine skeptic who's running for president as an independent and has been praised by Trump as a "common sense guy."

• In a video on his campaign website, Kennedy promises to "end the chronic disease epidemic in this country."
• Kennedy has promoted the discredited theory that vaccines cause autism, though he doesn't directly make this claim in the video. But he previously tied "the children's health crisis" to "environmental toxins" and vaccines in an e-book published by the Children's Health Defense, which he founded.
• Kennedy is "pleased" that Trump is highlighting the rise in childhood disease, said Kennedy campaign spokesperson Stefanie Spear. Trump's attention to the issue "testifies to the success of Children's Health Defense and many other activist organizations in putting the chronic disease epidemic on the political radar," she said.

Indiana Medicaid Cuts

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

Isabella Volmert at AP:

Indiana’s Family and Social Services Administration said the cost of Medicaid reimbursement for the behavioral therapy, commonly referred to as ABA, has ballooned in recent years because of the growing number of children seeking the services and the amount that providers have billed the state. The state plans a universal, hourly reimbursement rate for the therapy, but the planned amount is lower than what providers have previously received on average.

Advocates and centers worry this will mean accepting fewer patients or even closing, as has happened in other states such as Colorado this year.

“Companies just kept leaving and it just kind of turned into a crisis situation,” said J.J. Tomash, who leads an ABA provider in Colorado called BehaviorSpan. He blamed Medicaid reimbursement rates that have not kept up with the cost of living.

Medicaid began covering the services in 2016, and providers in Indiana set their own rates until now. But centers say the new rates are still not enough to keep them running and are far below the previous statewide average of $97 per hour.

Indiana Act for Families, a coalition opposing the new rates, said the proposal is 10% below providers’ operating costs. Although Indiana has said the new rates are aligned with pay in other states, the coalition argued the state used outdated data in their comparison.

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ABA is not without critics. Zoe Gross, advocacy director at the Autistic Self-Advocacy Network, said ABA’s goal is to eliminate behaviors considered autistic and teaches children to conform with neurotypical behaviors.

“It teaches you that the way you naturally behave is not OK,” she said.

But families who have found it helpful find it hard to imagine a future without access.