This story was originally published by KFF Health News. It also ran on CBS News and can be republished for free.
By Claire Sibonney, KFF Health News
At Chain of Lakes Elementary School in Winter Haven, Florida, Josette Smith’s 9-year-old son, Ethan, gets to do what he loves most: crafts, math, and science. That is, when he isn’t being pulled out of class.
Ethan has autism and attention-deficit/hyperactivity disorder. He was diagnosed with autism in kindergarten after displaying behavior that concerned his relatives: He paced, flapped his arms, and became consumed with highly specific interests, such as Martin Luther King Jr. and dachshunds.
In a meeting with school administrators and the district to develop his individualized education program, a legal agreement that outlines the support Ethan requires, the team agreed he required a trained paraprofessional to help him regulate his emotions and remain in class, according to complaints Smith filed against the school. However, the complaints alleged, administrators were unwilling to provide the dedicated aide.
Research from the Annenberg Institute for School Reform at Brown University and the Center for Education Policy Analysis at the University of California-Irvine found that race, gender, and socioeconomic gaps persist in autism identification. 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.
“This administration is taking us backwards,” said Camille Proctor, founder and executive director of The Color of Autism Foundation.
HHS spokesperson Emily Hilliard said in an email that Kennedy’s statements last spring “emphasized the need for increased research” into autism.
Meanwhile, the Education Department’s Office for Civil Rights, which often intervenes when students face discrimination based on race, sex, religion, or disability and their families can’t resolve complaints locally, has been slashed. The office had a backlog of nearly 12,000 civil rights cases, and a recent Washington Post investigation found that the Trump administration “indefinitely froze” many of these cases.
On top of those cuts, the White House vowed to stop “equity” investigations in areas such as school discipline despite research showing that nonwhite and low-income kids disproportionately face barriers to being identified with autism and attaining resources for the condition and other neurodevelopmental diagnoses.
It also decimated the Institute of Education Sciences, the Department of Education’s research arm, canceling roughly $900 million in funding for research, including long-standing data collection in schools. The administration further proposed ending data collection on racial disparities in school discipline. The National Institutes of Health and National Science Foundation have purged projects referencing terms including “race” and “gender,” gutting research focused on diversity, equity, or inclusion.
“If we’re cutting any data collection that helps us understand the problem, we’re not going to fix it,” said Paul Morgan, director of the Institute for Social and Health Equity at SUNY-Albany, who led the studies on disparities in autism diagnoses. “All we’re doing right now is making the situation worse.”
The nation’s influential federal autism panel also appears to lack prominent scientists and Black members and has fewer autistic self-advocates than before, said Proctor of The Color of Autism Foundation, who served on the panel before the Trump administration took over. The panel has also been criticized for including vaccine opponents.
HHS’ Hilliard said the members “bring decades of experience in autism research and clinical care” and are committed to aligning “federal policy with gold-standard science.”
Back in Florida, Smith wants Ethan transferred to a school better equipped to support him. She has also requested an expedited hearing for a due process complaint she filed with the state.
The family is also navigating battery charges against Ethan, the first of which was filed in March after the school called police on him for allegedly hitting staff. A police report and an email provided by Smith showed that police arrived at her door hours after Smith informed the school district in writing that she had filed a federal discrimination complaint. Smith also pointed out the timing in several of her complaints.
A Polk County Public Schools spokesperson declined to comment, citing student confidentiality. The Florida Department of Education did not respond to a request for comment.
“As a Black mom, you dare not complain about anything,” Smith said. “Once you start advocating for your kids, it’s a problem. But it’s not these kids’ fault that they have a disability.”
Without timely assessments and interventions, studies show, children of color with disabilities such as Ethan are disproportionately at risk of being funneled out of public schools and into the juvenile and criminal justice systems.
Catherine Lhamon led the Education Department’s Office for Civil Rights in the Obama and Biden administrations and is now executive director of the Edley Institute at Harvard Law School.