At Chain of Lakes Elementary School in Winter Haven, Florida, nine-year-old Ethan spends his days immersed in the subjects he loves most: hands-on crafts, challenging math problems, and the wonders of science. For Ethan, a bright and curious boy, these moments of focus are his sanctuary. However, these periods of engagement are frequently interrupted, as the classroom experience he deserves is often cut short by administrative decisions that pull him away from his peers.
Ethan, who is diagnosed with autism and attention-deficit/hyperactivity disorder (ADHD), began showing signs of his neurodivergence in kindergarten. His family noted behaviors that set him apart from his classmates: he would pace rhythmically, flap his arms to self-regulate, and become deeply, almost singularly, consumed by specific interests, such as the life and legacy of Martin Luther King Jr. or the history of the dachshund breed. While these interests were a testament to his intelligence and passion, they also signaled a need for structured support within the school environment.
In an effort to ensure Ethan’s success, his mother, Josette Smith—a seventh-grade science teacher herself—worked with school administrators and the district to craft an individualized education program (IEP). This legal document is designed to outline the specific supports and accommodations a student with disabilities requires to access a free and appropriate public education. During these planning meetings, the team reached a consensus: Ethan required a trained paraprofessional. This aide was intended to serve as a vital bridge, helping Ethan regulate his emotions during difficult moments and ensuring he could remain in the classroom.
However, according to formal complaints filed by Smith, the reality in the classroom did not match the promises made on paper. Smith alleges that administrators were consistently unwilling to provide the dedicated aide they had agreed upon. Instead of implementing the necessary supports, the school resorted to punitive measures. Ethan was repeatedly removed from instruction, subjected to suspensions, and, in a move that devastated his family, school staff called the police on him during his third-grade year.
For Smith, the path to accountability has been grueling. After filing initial complaints with the local school district and the state of Florida—and seeing the problems persist—she took the matter to the U.S. Department of Education’s Office for Civil Rights (OCR). This federal agency serves as the primary safeguard for families who believe their children’s rights have been violated based on race, disability, or gender. In her federal complaint, Smith argued that the school had discriminated against her son not only due to his disability but also his race, alleging that the institution utilized aggressive pressure tactics to push her Black son out of the public school system entirely. In May, the Office for Civil Rights announced it would launch an investigation into several of her allegations, a small measure of hope in a long, taxing battle.
The systemic challenges facing families like the Smiths are occurring against a backdrop of significant federal retrenchment. In recent years, the White House has actively moved to reduce the scope of federal oversight, cutting the capacity of offices dedicated to civil rights and weakening their ability to investigate and resolve cases. Furthermore, federal funding for research into the disparities that people of color face in obtaining accurate diagnoses and securing vital resources for disabilities has been slashed.
The scale of the issue is significant. As of 2022, data indicated that approximately 1 in 31 children in the United States by age 8 had been diagnosed with autism spectrum disorder. While research into the disparities of these diagnoses has historically yielded mixed results, a recent study from the Institute for Social and Health Equity at the State University of New York at Albany paints a clearer, more concerning picture. The research found that gaps related to race, gender, and socioeconomic status remain stubborn fixtures of the education system. Analyzing fourth graders from 2003 to 2022, the study revealed that students of color, girls, low-income students, and multilingual learners were consistently less likely to be identified with autism than their peers. A forthcoming, large-scale study by the same researchers suggests that these gaps are even more pronounced among students with overlapping identities, with Black and Hispanic girls being particularly unlikely to receive timely identification.
This landscape has shifted further as the second administration of President Donald Trump has placed autism at the center of a contentious national conversation. In August, President Trump signed an executive order aimed at reducing routine childhood immunizations while propagating the scientifically debunked claim that vaccines are linked to autism. The administration has framed this as a top-tier public health priority. Robert F. Kennedy Jr., serving as Secretary of Health and Human Services, has characterized autism as a “tragedy” that “destroys families,” while continuing to lend credence to unsubstantiated theories regarding the causes of autism, including links to childhood vaccines and the use of Tylenol during pregnancy.
“This administration is taking us backwards,” said Camille Proctor, founder and executive director of The Color of Autism Foundation. Her organization and others argue that these narratives not only distract from the real-world needs of autistic individuals but also perpetuate harmful stigma.
In response to concerns, HHS spokesperson Emily Hilliard stated that Secretary Kennedy’s comments were intended to emphasize the need for increased research into environmental factors contributing to the rise in autism diagnoses, rather than to stigmatize individuals or their families. She added that the agency’s ongoing changes are focused on making federal support systems more effective for children. However, the lack of response from both the White House press office and the Department of Education to requests for comment has left many families feeling abandoned by the federal institutions meant to protect them.
The structural changes within the government have directly impacted students with disabilities. In March 2025, President Trump signed an executive order initiating the dismantling of the Department of Education, a move that included the closure of seven of the Office for Civil Rights’ 12 regional offices. By June, the administration had largely shifted special education oversight to the Department of Health and Human Services, while moving the Office for Civil Rights’ jurisdiction to the Department of Justice.
Nancy Potter, a former supervising attorney at the Office for Civil Rights who now operates an education law firm, described the move as a dangerous reorganization. “On paper, it’s a reorganization,” Potter explained. “In practice, it could leave families whose complaints involve overlapping harms—such as race and disability discrimination—caught between agencies built for different jobs. The hardest thing to prove in these cases is now the thing with no obvious home.”
The administrative backlog is already telling. A report released in April 2026 by a Senate committee led by Sen. Bernie Sanders (I-Vt.) concluded that the Office for Civil Rights had reached a 12-year low in the resolution of discrimination complaints, with a backlog of nearly 12,000 cases. A subsequent investigation by The Washington Post found that the Trump administration had “indefinitely frozen” a significant number of these cases.
Coupled with these bureaucratic hurdles, the White House has vowed to halt “equity” investigations regarding school discipline. This policy shift ignores the well-documented research showing that nonwhite and low-income students face systemic barriers in both receiving an autism diagnosis and accessing the resources necessary to thrive. The Institute of Education Sciences, the research arm of the Department of Education, has been effectively decimated, with $900 million in funding for long-standing data collection in schools canceled. Furthermore, the administration has proposed ending the collection of data on racial disparities in school discipline, and agencies like the National Institutes of Health and the National Science Foundation have begun purging projects that reference “race” or “gender,” effectively gutting research focused on diversity, equity, and 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. “All we’re doing right now is making the situation worse.”
The impact of these policies extends to the highest levels of advocacy. The influential federal autism panel now appears to lack prominent scientists and Black members, and it has significantly fewer self-advocates than in previous years, according to Proctor. The panel has also faced criticism for the inclusion of outspoken vaccine opponents, raising questions about the administration’s commitment to evidence-based policy.
For the families on the front lines, the result is a profound sense of instability. Cameron Lynch, a former policy analyst for the Autistic Self Advocacy Network, summarized the sentiment among advocates: “All of it creates chaos where chaos is not necessary.”
David Sitcovsky, vice president of advocacy at Autism Speaks, emphasized that the common thread in these systemic failures is a lack of access. Families, particularly those from marginalized communities, often find themselves without a clear path to help when their children are denied services or support. “If their child’s rights are not being upheld, do they have a clear path to get help?” Sitcovsky asked.
For Josette Smith, that path remains obstructed. She continues to wait for a decision on her federal civil rights case—a process she was told could take more than a year—as Ethan enters his fourth-grade year. She is seeking a transfer for her son to a school better equipped to provide the support he needs, and she has filed for an expedited hearing for a due process complaint with the state.
Beyond the classroom, the family is navigating the legal consequences of the school’s actions, including battery charges against Ethan that were initiated after the school called the police to address his behavior. A police report and internal communications provided by Smith revealed that officers arrived at her home mere hours after she informed the school district in writing that she had filed a federal discrimination complaint.
“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.”
Research has long shown that without timely assessment and appropriate intervention, children of color with disabilities are disproportionately at risk of being pushed out of the public school system and funneled into the juvenile and criminal justice systems—a phenomenon known as the school-to-prison pipeline.
Catherine Lhamon, who led the Education Department’s Office for Civil Rights during the Obama and Biden administrations and now serves as the executive director of the Edley Center on Law & Democracy at the University of California-Berkeley School of Law, warns that the current environment is increasingly precarious. “People speed if they don’t see a police car,” Lhamon said. “If they think that there’s no one at the federal government watching them in school, we will see an increase in discrimination.”
