Court Case on Research Funds

In The Politics of Autism, I discuss the issue's role in presidential politics. Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

A September 18 release from the National Center for Learning Disabilities:

The Trump Administration must make good on their promises to spend hundreds of millions in education research funds before they expire on September 30, 2026, a federal judge in the District of Massachusetts ruled yesterday. The ruling also prohibited OMB from using apportionment footnotes to apply policy directives from Executive Orders to hundreds of millions of dollars in Congressionally appropriated funding for education research programs.

The ruling came in a lawsuit brought by Protect Democracy and Jacobson Lawyers Group on behalf of the National Center for Learning Disabilities, the Massachusetts Teachers Association, and other stakeholders against OMB Director Russell Vought, Education Secretary Linda McMahon, and acting IES Director Matthew Soldner in June, to ensure students, schools, and education organizations across the country can receive hundred of millions of dollars already appropriated for students. The suit argued that the funding freeze violated the Anti-Deficiency Act, the Administrative Procedures Act, and the Constitution’s separation of powers.

Today’s order holds that OMB acted unlawfully in using apportionments to forbid the Department of Education from spending education research funds on purported DEI activities, and to require the Department to give political appointees control over the awarding of grants. Setting aside the imposition of these Executive Order policy directives through the apportionment process ensures that OMB cannot leverage the apportionment process — and threaten agency officials with administrative and criminal penalties tied to that process — in order to dictate how congressional appropriations are spent.

The court also ordered the Department of Education to update the court as the end of the fiscal year nears, to ensure that all the funds appropriated by Congress are obligated before they expire.
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“The court affirmed today that OMB cannot abuse obscure administrative processes to supplant Congress’s sole authority to dictate how federal funds are spent.” said Dan Jacobson, Jacobson Lawyers Group PLLC.

Click to read more about this case and view related documents on Protect Democracy’s website here.

Ema Rose Schumer and Claire Shapiro at Executive Functions:

Judge Allison D. Burroughs (D. Mass.) on Thursday granted partial summary judgment to education groups and vacated, as contrary to law and arbitrary and capricious, Office of Management and Budget apportionment footnotes conditioning Department of Education research funds on compliance with two of President Trump’s executive orders, including the January 2025 order ending federal diversity, equity, and inclusion programs. (Memorandum and Order.)

 From the Memorandum and Order:

Plaintiffs contend that they have standing to challenge the footnotes because the Department and its political appointees have interpreted the prohibition on “DEI” to require “scrapping programs for children with disabilities” on the basis that these programs are a form of inclusion, and that “Knowledge Alliance’s members have been chilled from mentioning their work involving equity and disabilities in their funding applications.” [ECF No. 63 at 15]. According to Plaintiffs, this shows that the Executive Order Footnotes will harm them regardless of whether the Department carries them out in a way that directly conflicts with any staute.

 

IACC: Bad Stuff

 In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.

Ed Pilkington at The Guardian:

Autism groups and researchers have reacted with alarm to a federal research roadmap drawn up by advisers handpicked by the US health secretary, Robert F Kennedy Jr, fearing it will promote unproven fringe therapies at the expense of promising genetic research.

A slew of scientific bodies and groups within the autism community are warning that the 336-page plan risks deflecting federal dollars away from potentially groundbreaking genetic research in favor of unreliable alternative therapies.

There is little or no evidence, they say, that many of the proposed treatments work, or that they even fit the definition of autism.

“So much of the plan is fringe science that is absolutely not ready for prime time,” said Helen Tager-Flusberg, an emeritus professor at Boston University and founder of the Coalition of Autism Scientists.

Alliances of autistic people are especially worried that the plan could make it easier for them to be sent to institutions. The plan calls for government agencies to try out “supported-living models” such as “farmstead or campus-based communities”, which the groups fear could revive forms of institutional confinement.

The strategic plan is the work of the Interagency Autism Coordinating Committee (IACC), a body that for 25 years has advised US health secretaries on federal efforts related to autism.

Alison Singer at MedpageToday:

Parents report that children with autism lose skills at all ages, including during toddlerhood, and through adolescence into adulthood. The new plan puts considerable emphasis on finding medical causes of early childhood regression (immune, metabolic, mitochondrial, infectious, gastrointestinal) but does not give comparable prominence to regression as a manifestation of the underlying genetics and neurodevelopmental biology of autism itself.

We can read between the lines. Committee members' comments make clear that this framing is intended to justify further research into vaccines as a cause of autism, despite decades of research and dozens of studies finding no causal link between vaccines and autism.

Also, despite a significant number of public comments calling for substantial revisions to the plan, and the fact that thousands of pages of public comments were not distributed to committee members until the night before the meeting, the IACC chair completely shut down efforts by committee members to delay voting on the plan until all the comments could be read and considered.

 

Administration Cuts Research On Parents with Disabilities

Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they are firing most of the staff who enforce it.  A judge has temporarily paused the attack, but the administration will likely find ways to ignore or circumvent the order.

Roni Caryn Rabin at NYT:

The Trump administration has eliminated a funding stream that for the last 30 years has supported the only U.S. government-backed national research center focused on parents with disabilities.

The National Research Center for Parents with Disabilities will begin to phase out its operations on Aug. 31, when the current five-year grant ends, officials from the center said.

The center, based at Brandeis University’s Heller School for Social Policy and Management, is a multiple university collaboration aimed at improving the lives of the 4.5 million U.S. parents with disabilities and their families. The center, which funds researchers in Boston and around the country, analyzes health care access and economic hardships faced by parents with disabilities and tracks state laws, serving as a clearinghouse for information on the issue.

The government has supported the center for decades through a competitive grant that has provided $500,000 a year in recent years and was slated to increase. Monika Mitra, the center’s director, said that an initial notice announcing the grant was posted a year ago, as is usually the case. But the more detailed information required to submit an application, which normally arrives in the grant application portal by February, never appeared. In July, the original link announcing the grant vanished.

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The withdrawal of the funding comes in the wake of a series of administration announcements that have raised concerns for people with disabilities. In June, the Justice Department’s Office of Legal Counsel issued a memo indicating that states were not required to provide services enabling people with disabilities to remain in their homes and not be forced into institutions. The administration also announced plans to move special education programs and civil rights enforcement in education out of the Education Department, which raised concerns among advocates who said the step would weaken oversight.

Trump v. Autistic People

Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they are firing most of the staff who enforce it.  A judge has temporarily paused the attack, but the administration will likely find ways to ignore or circumvent the order.

At CBS and KFF,  Claire Sibonney reports that the Trump administration has effectively gutted the Office for Civil Rights at the Department of Education.

For families who believe their child's rights were violated based on race, disability, or gender in school, the federal agency often has been one of the main places to turn. But the White House cut its offices and weakened its ability to follow up with cases, as well as slashed funding to research on disparities that people of color face in getting diagnosed and attaining resources for disabilities.

About 1 in 31 U.S. kids by age 8 had been diagnosed with autism spectrum disorder as of 2022. Although previous research on disparities in childhood autism diagnoses has had mixed results, a recent study from the State University of New York at Albany's Institute for Social and Health Equity found that race, gender, and socioeconomic gaps persist. Among fourth graders from 2003 to 2022, students of color, girls, low-income students, and multilingual learners were less likely than peers to be identified with autism in school, even as diagnoses rose among children from historically marginalized groups, the study found. A large forthcoming study by the same researchers found the biggest gaps among overlapping identities. Black and Hispanic girls were especially unlikely to be identified.

All this has happened as President Donald Trump's second administration has put autism in the spotlight. In early August, Trump signed an executive order to whittle down routine immunizations for kids while falsely tying vaccines to autism. He has presented it as a personal priority and one of "the most alarming public health developments in history." Health and Human Services Secretary Robert F. Kennedy Jr. in April 2025 called autism a "tragedy" that "destroys families," and he's lent credence to ungrounded claims of autism's causes, including unfounded links to childhood vaccines and Tylenol during pregnancy

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Education Research Cuts

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 Trump administration is halving the staff of the Department of Education.

Lexi Lonas Cochran at The Hill:

The educational research community is looking to pick up the pieces after the Trump administration has canceled dozens of studies and ended hundreds of jobs.

In line with the Department of Government Efficiency (DOGE), hundreds of federal contracts have been canceled with education research groups, accused by the administration of either being useless or simply too “woke.” Longitudinal studies on early childhood education and artificial intelligence literacy are among those that have taken significant hits.

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“We’ve had a number of projects canceled, including some very long-standing research projects, namely the Regional Education Labs that WestEd has been part of for almost its entire history, so 59 years,” said Jannelle Kubinec, CEO of WestEd, adding studies relating to reading, chronic absenteeism and math and numeracy have also been terminated.

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“Across the board, we’re really talking about a complete capacity downsize. It’s people, it’s money, it’s spaces, it’s resources. So, it’s definitely a lot all at once […] Outside of contract cancelations and risk, a lot of the harm is yet to come,” said Jinann Bitar, higher education research and data analytics at EdTrust.

Along with interruptions in longer studies, the turbulence in the field has led to hesitation in researchers wanting to start a career in this area, as there are few safe spaces for the studies left.

“This is going to be gut-stopping for current researchers, but it’s actually going to be almost impossible to overcome for early-career researchers if they don’t have anywhere stable to be in the meantime on their research,” said Bitar.

Trump Slashes Autism Research

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his words and actions have shown, he despises Americans with disabilities.   

To lead a "study" of autism causation, RFK Jr. has named an antivaxxer who is neither a scientist nor a physician.  Meanwhile, the administration is slashing actual autism research.

Alana Samuels at Time:

“Funding for autism research is actually disappearing at a time when we see the director of HHS talking a lot about autism as though they think it is important,” says Micheal Paige Sandbank, an autism researcher at the University of North Carolina at Chapel Hill. “Behind the scenes, they are taking a hammer to the whole apparatus for autism research.”

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A big funder of autism research has historically been the DOE’s Institute of Education Sciences, says Sandbank. But the institute, which has a budget of $800 million, was gutted in the Trump Administration’s layoffs, with only a skeleton staff remaining. Autism research at the institute focused on developing and evaluating school-based interventions to improve outcomes for students with autism.

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Another canceled grant from the NSF funded autism programs in schools and universities. The Frist Center for Autism and Innovation at Vanderbilt University lost $7.7 million in funding because its grant application, which was initially approved, included the terms “inclusion” and “accessibility,” according to Jessica Schonhut-Stasik, who runs communications for the Frist Center and was also a student in the program. The program offered grants for neurodivergent students or people studying neurodivergent students, says Schonhut-Stasik. The grant also sponsored a summer summit for autistic students, says Schonhut-Stasik, who is herself autistic. “This is just so deeply sad,” she says. “To be given this money, to be told, ‘Here is the money to pursue your dreams,’ is just so big for any autistic person,” she says.

...DOD also funded a lot of autism research, Sandbank says, but a reorganization there has left future projects in jeopardy. The DOD funding was through something called Congressionally Directed Medical Research Programs. In each of the last five years, the Autism Research Program under that bucket has received $15 million dollars, according to DOD press releases. The DOD studies autism in part because it affects children of military families.

In 2025, though, a number of the same research programs received funding as they had in the past, including breast cancer research. But autism was not among the programs listed to receive funding in 2025 announcements. Because autism is not included, Sandbank, who was going to submit a grant for this funding, no longer plans to, she says.
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NIH is also a huge funder of autism research. But shifting priorities there have ended or delayed some of these projects, says David Mandell, a professor of psychiatry at the University of Pennsylvania who studies autism. The Trump Administration has begun to review and cancel grants that have what it deems diversity, equity, or inclusion terms in them because of a Trump executive order seeking to end what it called “radical and wasteful government DEI programs and preferencing.” Grant applicants are being told, Mandell says, that their research no longer meets “agency priorities.” One public HHS document shows at least two autism grants canceled in the sweep: a project looking at biomarkers of late autism diagnosis in female and gender-diverse people, and one preventing suicide among autistic adults.

Trump v. People with Disabilities

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his words and actions have shown, he despises Americans with disabilities.   

April Rubin and  Maya Goldman at Axios:

People with disabilities say President Trump's DEI purge is eroding health care, education and legal protections they've only won in recent decades.

Why it matters: The Trump administration has taken actions that undermine accessibility measures — critical for leveling the playing field for people with disabilities — as part of its efforts targeting diversity, equity, and inclusion efforts."It's very clear that there is an orchestrated attack by conservatives to dismantle the rights of people with disabilities," said Shawn Murinko, a Washington resident who has cerebral palsy.

State of play: Trump last month ordered an end to all federal programs that mandate or invoke accessibility, alongside diversity, equity and inclusion.The Department of Justice said it will penalize programs that promote accessibility.

Trump has pledged to close the Department of Education, which enforces protections for students with disabilities in school.

Meanwhile, Food and Drug Administration officials said the word "disabled" was banned from external communications, though the White House later claimed that was an error.

Cuts to National Institutes of Health funding also threaten existing and future disability research.

The federal government is one of the largest employers for people with disabilities, but return-to-office mandates could force some out of their jobs.

Rachel Zamzow at The Transmitter:

For Cara Pugliese, the email came at 4:54 p.m. on Saturday, 15 February. According to a Facebook post that Pugliese published on 18 February, her employer, the U.S. National Institute of Mental Health (NIMH), wrote that she was “not fit for continued employment because your ability, knowledge, and skills do not fit the Agency’s current needs, and your performance has not been adequate to justify further employment at the Agency.”

Pugliese was chief of the Autism, Attention-Deficit/Hyperactivity Disorder, and Externalizing Disorders Interventions Research program. Her abrupt termination is “ridiculous,” says Laura Anthony, professor of psychiatry at the University of Colorado Anschutz Medical Campus, who has mentored and worked with Pugliese since 2013. “She’s such an amazing scientist, and creative and working hard to get interventions out to where kids and families are who need them,” adds Anthony, who has corresponded with Pugliese since receiving the news of her layoff. “She has been a superstar [at the NIMH] as well.”

Pugliese joins what is now reported as 1,165 National Institutes of Health employees cut from the agency since 14 February. The layoffs mostly targeted probationary employees, including Pugliese, who had held her position for 344 days—just 21 days shy of completing her one-year probationary period, according to her 18 February Facebook post, which has been shared more than 26,000 times. (Representatives at the NIMH have not responded to The Transmitter’s email and phone requests for comment.)

The Need for Research Beyond the West

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

Petrus de Vries at The Transmitter:

Almost everything we know about autism comes from a handful of WEIRD (Western, educated, industrialized, rich and democratic) countries in the so-called “global north,” yet most autistic people live in low- and middle-income countries (LMICs) around the globe that are quite different from these predominantly English-speaking nations. In a review conducted in 2017, my colleagues and I discovered that less than 1 percent of all autism research to date was performed in Africa, a continent that is predicted by UNICEF to be the home of more than 40 percent of the world’s children by 2050. At the service level, the majority of people in LMICs receive no diagnoses or supports, and in the few—typically urban—areas that can offer services, families often have to pay out of their own pocket. Finding strategies to meet the needs of autistic people and their families in LMICs is therefore fast approaching critical levels.

Scientists have made some progress toward diversifying autism research in high-income countries, by setting up initiatives to increase the diversity, equity and inclusion of the researchers, organizations and communities involved. My colleagues and I acknowledge those efforts. But unless autism research becomes diverse and global at the same time, we will retain the “knowledge gap” between the high-income/English-speaking nations and the rest of the world.

The International Society for Autism Research (INSAR) annual meeting begins tomorrow in Melbourne, Australia. Having this meeting in Australia, rather than in the U.S. or Europe as has previously been the case, is a values-based action intended to make it easier for researchers, clinicians and advocates from the Western Pacific Region to participate. The program deliberately includes panels and special-interest groups on the perspectives and needs of Indigenous, minority and other marginalized groups across the Western Pacific Region. Discussions are also slated to include the research priorities of diverse communities across the globe.

Health Disparity

 In The Politics of Autism, I discuss research priorities.

From Disability Rights Education & Defense Fund (other signers include Autism Speaks, the Autism Society, and the Autistic Self Advocacy Network):

Along with 174 organizations and individuals, DREDF joined a letter to protest a recent decision by an Advisory Committee of the National Institutes on Minority Health and Health Disparities (NIMHD) to not recognize people with disabilities as a health disparity population across the National Institutes of Health (NIH). Such recognition would allow NIH funding to go toward projects that explicitly include a focus on disability health disparities. It would also incentivize efforts to recruit researchers with disabilities and people with disabilities as participants in clinical research. Instead, NIMHD adopted a Working Group’s recommendation to develop and fund an “Office of Disability Research” to identify and work on what the Working Group saw as research “gaps.” The Working Group members were appointed by NIMHD, and did not include any person who openly identified as a person with disabilities. As a result of this decision, the disability community will continue to be denied the tangible benefits and tools that would help end longstanding and preventable barriers, stigma, and bias that deny optimal health to individuals with disabilities.

NIMHD’s given reasoning for its rejection, released barely a week before the proposed Section 504 rule was made public, is based on ableist assumptions about disability that are apparent in both the September 1, 2023 Working Group’s presentation and NIMHD’s discussion following the presentation (approximately l20 minutes beginning at the 3:57 hour mark). The Working Group seemed stymied by the reality that disability arises from different causes, and can medically manifest in different ways, occur at different times, and progress at different rates.

The lack of a single widely accepted definition of disability was seen as a “key gap” because NIMHD could not identify beforehand who would be affected by designating people with disabilities as a health disparity population. The Working Group also defined health disparities as “preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health . . .”, and then stated that “not all health differences in individuals with disabilities meet the criteria of a health disparity.” The Working Group insists on an “all or nothing” approach, which apparently requires all health differences between disabled persons and non-disabled persons to be a preventable difference. This problematic application of the definition of health disparity shows NIMHD’s bias toward separating those who have a disability or chronic condition from those who experience health disparities.

One of the most powerful lessons of Section 504, and a fundamental motivation for the development of a modern cross-disability rights movement in the 70s, was the understanding that the presence of disability invoked a common discriminatory response and could therefore be fought using common legal tools and advocacy. This lesson was patently lost on NIMHD and the Working Group, which seemed unable to recognize that multiple common factors keep people with disabilities from getting equitable and effective healthcare. For the NIMHD, the well-documented impact of healthcare barriers, bias, and discrimination was lost in the specifics of individual diagnoses and medical definitions.

In the end, the Working Group concluded that there were more than twice as many risks as benefits arising from designating people with disabilities as a health disparity population. They called attention to a “high potential for mission creep and loss of focus at NIMHD” because its limited budget and staff could be overwhelmed by funding applications from such a “broad and heterogeneous population.” The Working Group decided to recommend that NIMHD establish a separate Office or Institute focused on disability research that would have a distinct budget.

This recommendation, which was accepted by the NIMHD Advisory Committee, essentially calls for segregated disability health and healthcare disparities research. Lip service was given to the need for “a greater emphasis on the intersection of disabilities and existing populations with health disparities, but it is completely unclear who would lead an intersectional effort or how research efforts would be coordinated among NIMHD and a newly created office. The Advisory Committee’s decision also fails to specify why the Working Group’s recommendations for forming a separate Office of Disability Research could not be carried out after people with disabilities receive designation as a health disparity population.

Even as we recognize Secretary Becerra and his team for getting so much right about the proposed update to the Department of Health and Human Services (HHS) Section 504 rule, we call on the Secretary to further reaffirm the principles of nondiscrimination, full inclusion of people with disabilities, and commitment to health equity by recognizing people with disabilities as a health disparity population.

Biases in Autism Research

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

Hari Srinivasan at Time:

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

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

The Need for Lifespan Research

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

 At Time, Eric Michael Garcia writes about the need for more research into lifespan issues:

And this is not for a lack of things to research about autistic people’s lifespans. Many autistic people still struggle to find employment—one study showed that autistic people in their early 20s had a lower employment rate than their disabled peers—and that is to say nothing of autistic people who go undiagnosed or diagnosed later, which is often the case for women, femme-presenting people and people of color. Similarly, it is divorced from the legitimate health needs such as how that biggest killer of autistic people with intellectual disabilities is epilepsy while those without intellectual disabilities are also at risk of dying from circulatory diseases like heart disease or suicide. Similarly, plenty of autistic people I interviewed for my book dealt with homelessness and poverty, while others are unable to access programs like Supplemental Security Income because they are not “disabled enough,” even while struggling to find employment.

Engaging Autistic People in Autism Research

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

Mike McNulty at USC:

For too long, too few autistic people have had a say in how autism research is designed, developed and disseminated, and researchers have not tapped into the expertise that only autistic people and their families have. A new USC-coordinated project looks to upend that disparity by intentionally allying with stakeholder groups, engaging community partners and exploring ways of better responding to this diverse community in the future.

The TRUST project — short for Transforming Research: Understanding Sensory Experiences in ASD, Stakeholders Working Together — is a new, two-year project supported by a $243,000 award from the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The institute is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers and clinicians with evidence to make better-informed health and health care decisions.

“We will particularly attend to the ‘autistic voices’ of underrepresented or underserved communities and ensure that individuals who have been marginalized due to stigma, social behavior or verbal abilities are included,” said Professor Mary Lawlor, TRUST project lead at the USC Chan Division of Occupational Science and Occupational Therapy. “Autistic people have really important expertise, and it’s exciting to engage people in the community who really want to share their expertise too.

The TRUST project begins by convening four groups of stakeholders: autistic self-advocates, family members and caregivers, researchers and interdisciplinary service providers, including occupational therapists. Lawlor, who is jointly appointed to the Keck School of Medicine of USC’s Department of Pediatrics, will facilitate conversations using narrative-based strategies, which give space for people to tell their own stories with their own words about what matters most in their own lives. These stakeholder groups will then coalesce to identify new research priorities, amplify engagement of the autism community in research, foster mutual trust and expand tools for enhancing future patient-centered outcomes research.

A sustainable alliance will propel stakeholder engagement in future research that extends beyond the project’s funding window and serve as a model for research projects outside of Southern California to replicate.

“A lot of researchers think that there is only one right perspective and can’t deal with differences effectively,” Lawlor said. “But you need to have opportunities like this, with multiple perspectives at the same table, to make people feel heard and seen.”

According to Lawlor, the TRUST project will narrow several glaring gaps in the existing literature about the sensory experiences of autistic people.

First, autism research has traditionally focused on children, with relatively less attention paid to the experiences of autistic adolescents and adults. Second, autism research has oversampled white/Caucasian participants and regrettably undersampled populations with racially and ethnically diverse backgrounds. Third, research has disproportionately focused on so-called “high functioning” participants — autistic people who perform and participate in everyday activities and roles wholly or largely independently. Lastly, the uptake of sensory processing research has been slow in clinical arenas, in part because service providers are rarely engaged in university-based research studies.

“Clinicians, as much as anybody, should be involved at the starting point of research,” said Erna Blanche, a clinical professor at USC Chan, lead contributor to the TRUST team and co-lead of the Clinician and Provider Stakeholder Group.

Blanche is also a member of the Sensory Processing and Autism Network, one of the four officially designated community partners contributing to the TRUST project. It’s a community-based research network based out of USC Chan that works to improve outcomes for people with sensory processing challenges and their families in everyday life.

Though each person with autism is unique, sensory processing challenges and sensitivities to a wide range of stimuli are cited as a common experience. Occupational therapists like Blanche frequently work with children on the autism spectrum to address sensory-processing differences to more fully engage in their daily activities, relationships and roles.

Blanche says that the TRUST project is an extension of SPAN’s ongoing efforts for knowledge mobilization, an approach to research whereby university and community partners work hand in hand, start to finish, in order to co-produce knowledge and maximize their impact outside of academia.

“In a way, people with autism have been unjustly disenfranchised,” Blanche said. “This will now bring them into the research fold in a much more meaningful and systematic way.”

In addition to SPAN, three other nonprofit organizations are officially named as TRUST project partners, and this network is likely to expand over the coming years:

• 5-Eleven Hoops is a nonprofit, basketball-based organization based in Long Beach. Founded by former pro basketball player Stacy McAlister, who has a son with autism, 5-Eleven Hoops uses active play strategies to enhance positive outcomes for youth with autism and other special needs and their families by building sportsmanship, social skills, coordination, strength and cognitive development.
• Autism Speaks is the largest autism advocacy organization in the United States and sponsors autism research and conducts awareness and outreach aimed at families, governments and the public, including activities every April 2 in honor of World Autism Awareness Day.
• Harbor Regional Center, located in Torrance, is one of the state’s 21 regional centers that contracts with the Department of Developmental Services. The nonprofit organization serves nearly 15,000 people who have developmental disabilities and their families in the South Bay, Harbor, Long Beach, and southeast areas of Los Angeles County.

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For further information about the TRUST project, contact Emily Ochi or Mary Lawlor.

Another Correlate: Aunts and Uncles on the Father's Side

In The Politics of Autism, I discuss various ideas about what causes the condition. Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Fever;  
• Birth by cesarean section;
• Anesthesia during cesarean sections;
• Maternal and paternal obesity;
• Maternal diabetes;
• Maternal and paternal age;
• Grandparental age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;
• Polycystic ovary syndrome;
• Infant opioid withdrawal;
• Zinc deficiency;
• Sulfate deficiency;
• Processed foods;
• Maternal occupational exposure to solvents;
• Estrogen in the womb;
• Morning sickness.

A release from NIH:

Roughly 3 to 5% of children with an aunt or uncle with autism spectrum disorder (ASD) can also be expected to have ASD, compared to about 1.5% of children in the general population, according to a study funded by the National Institutes of Health. Researchers also found that a child whose mother has a sibling with ASD is not significantly more likely to be affected by ASD, compared to a child whose father has a sibling with ASD.

The findings call into question the female protective effect, a theory that females have a lower rate of ASD than males because they have greater tolerance of ASD risk factors.
The results, derived from records of nearly 850,000 Swedish children and their families, appear in Biological Psychiatry. The study was conducted by John N. Constantino, M.D., at Washington University in St. Louis, and colleagues in the United States and Sweden.

“The results offer important new information for counseling people who have a sibling with ASD,” said Alice Kau, Ph.D., of the Intellectual and Developmental Disabilities Branch of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which funded the study. “The findings also suggest that the greater prevalence of ASD in males is likely not due to a female protective effect.”
Additional NIH funding was provided by the National Institute of Mental Health.

ASD is a complex neurological and developmental disorder that begins early in life and affects how a person interacts with others, communicates, and learns. Previous studies have found that roughly 3 times more males than females have ASD. Reasons for the difference are unknown.

One possible explanation is that females have a built-in resistance to the genetic factors leading to autism. With such a female protective effect, the theory holds that many women could carry such risk factors and be unaffected, but could transmit them to their sons, who lack the protective effect and may develop ASD.

In the current study, researchers analyzed data from Swedish national registers of births and family relationships. The children were born from 2003 to 2012. Roughly 13,000 children were diagnosed with ASD, about 1.5% of the total. Offspring of mothers with one or more siblings with ASD were about three times more likely than children in the general population to have ASD. Children of fathers with one or more siblings with ASD were twice as likely as children in the general population to have ASD, a rate that did not differ significantly than that of children whose mothers have a sibling with ASD.

According to the study authors, the results provide the first population-wide estimate of ASD risk to children of parents who have a sibling with ASD.

This finding challenges the existence of a female protective effect, Dr. Constantino explained, because if such an effect existed, the children of mothers with a sibling with ASD could be expected to have up to a 30% higher risk of ASD. Similarly, the researchers found no statistically significant increase in ASD risk for children whose uncles have ASD, compared to children whose aunts have the condition.

Reference
Bai, D et al. Inherited risk for autism through maternal and paternal lineage. Biological Psychiatry. 2020.

The Department of Defense and Autism

In The Politics of Autism, I discuss federal spending for people with autism and other disabilities. 

From the Pentagon's Autism Research Program:

It is estimated that 1 in 59 children are diagnosed with Autism Spectrum Disorder (ASD), with over 3.5 million (M) Americans living with this developmental disorder. The Department of Defense Autism Research Program (ARP) was established in 2007 to improve the lives of individuals with ASD by funding innovative, highly impactful research. Since its inception, the ARP has received $81.9M in Congressional
appropriations. The appropriation for the ARP for fiscal year 2018 (FY18) is $7.5M. Through the program’s Areas of Interest, the ARP focuses on ways to improve diagnosis, treatment, and study of the psychosocial factors that affect key lifetime transitions to independence and a better quality of life for those with ASD and their families. To date, the ARP has funded 152 research awards, resulting in over 230 peer-reviewed publications and 20 patent applications.

A December 24 release:

The FY20 Defense Appropriation provides $15 million (M) to the Department of Defense Autism Research Program (ARP) to provide support for research of exceptional scientific merit and innovation with high impact that focuses on autism spectrum disorders (ASD). As directed by the Office of the Assistant Secretary of Defense for Health Affairs, the Defense Health Agency J9, Research and Development Directorate, manages the Defense Health Program’s Research, Development, Test, and Evaluation (RDT&E) appropriation. The managing agent for the anticipated Program Announcements/Funding Opportunities is the Congressionally Directed Medical Research Programs (CDMRP) at the U.S. Army Medical Research and Development Command (USAMRDC).

Data:

Congressional Appropriations

• $81.9 million
  FY07-18
• $7.5 million
  FY19

Funding
Summary

• 160 Awards in
  FY07-18
• Recent Applications Recommended for Funding

Programmatic
Panels

• FY20 Programmatic
  Panel
• Previous Years' Programmatic
  Panels

Peer Review Participants

• FY19 Peer Review Participants
• Previous Years' Peer Review Participants