At Chain of Lakes Elementary School in Winter Haven, Florida, Josette Smith\u2019s 9-year-old son, Ethan, gets to do what he loves most: crafts, math, and science. That is, when he isn\u2019t being pulled out of class. <\/p>\n
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.<\/p>\n
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. Instead of implementing the supports her son needed, his school repeatedly removed him from instruction, suspended him, and even called police on him when he was in third grade, Smith wrote.<\/p>\n
Smith, a seventh grade science teacher, said she first filed complaints with the school district and the state with these allegations. But when problems persisted, she turned to the U.S. Department of Education\u2019s Office for Civil Rights, the federal agency tasked with resolving complaints like hers. Smith\u2019s federal complaint included the same account and alleged that the school discriminated against her son because of his disability and race, including deploying pressure tactics to push her Black son out of the public school. In May, the office said it would investigate several of her allegations.<\/p>\n
For families who believe their child\u2019s 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<\/a> and weakened its ability to follow up with cases, as well as slashed funding to research on disparities<\/a> that people of color face in getting diagnosed and attaining resources<\/a> for disabilities.<\/p>\n About 1 in 31 U.S. kids by age 8 had been diagnosed with autism spectrum disorder<\/a> 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\u2019s Institute for Social and Health Equity found that race, gender, and socioeconomic gaps persist<\/a>. 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.<\/p>\n All this has happened as President Donald Trump\u2019s second administration has put autism in the spotlight. In early August, Trump signed an executive order<\/a> to whittle down routine immunizations for kids while falsely tying vaccines to autism. He has presented it as a personal priority<\/a> and one of \u201cthe most alarming public health developments in history.\u201d Health and Human Services Secretary Robert F. Kennedy Jr. in April 2025 called autism a \u201ctragedy\u201d that \u201cdestroys families,\u201d<\/a> and he\u2019s lent credence to ungrounded claims of autism\u2019s causes<\/a>, including unfounded links to childhood vaccines and Tylenol during pregnancy<\/a>.<\/p>\n \u201cThis administration is taking us backwards,\u201d said Camille Proctor<\/a>, founder and executive director of The Color of Autism Foundation.<\/p>\n HHS spokesperson Emily Hilliard said in an email that Kennedy\u2019s statements last spring \u201cemphasized the need for increased research into environmental factors contributing to the rise in autism diagnoses, not to stigmatize individuals with autism or their families.\u201d She added that the agency changes are \u201cabout making federal support systems work better for children and families.\u201d White House spokesperson Kush Desai did not respond to a request for comment. Neither did the press office for the Department of Education.<\/p>\n \t\t\t\t\t<\/p>\n \t\t\t\t\t\t\tJosette Smith filed a complaint with the federal Department of Education\u2019s Office for Civil Rights on behalf of her 9-year-old son, Ethan, alleging that his school in Winter Haven, Florida, discriminated against him because of his disability and race. The office said it would investigate several of her allegations and dismissed others that the state had already reviewed. \t\t\t\t\t\t (Octavio Jones for KFF Health News)<\/p>\n \t\t\t\t\t<\/p>\n \t\t\t\t\t\t\tEthan was repeatedly removed from class, suspended, and charged with battery as a third grader at a public school in Winter Haven. (Octavio Jones for KFF Health News)\t\t\t\t\t\t<\/p><\/div>\n<\/div>\n The cuts to agencies and research have affected parts of the federal government focused on students with disabilities. In March 2025, Trump signed an executive order<\/a> to dismantle the Department of Education and closed seven<\/a> of its Office for Civil Rights\u2019 12 regional offices. This June, his administration largely shifted<\/a> special-education oversight to HHS and the Office for Civil Rights to the Department of Justice.<\/p>\n \u201cOn paper, it\u2019s a reorganization,\u201d said Nancy Potter<\/a>, a former supervising attorney at the Office for Civil Rights who now runs her own education law firm. In practice, she said, it could leave families whose complaints involve overlapping harms \u2014 such as race and disability discrimination \u2014 caught between agencies built for different jobs. \u201cThe hardest thing to prove in these cases is now the thing with no obvious home.\u201d<\/p>\n In April, a year after the order, a Senate committee report from Sen. Bernie Sanders (I-Vt.) concluded that the Office for Civil Rights had reached a 12-year-low<\/a> in resolutions to discrimination complaints and had a backlog of nearly 12,000 civil rights cases. A recent Washington Post investigation found that the Trump administration \u201cindefinitely froze\u201d many of these cases.<\/p>\n On top of those cuts, the White House vowed to stop \u201cequity\u201d investigations<\/a> 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<\/a> and other neurodevelopmental diagnoses.<\/p>\n It also decimated<\/a> the Institute of Education Sciences, the Department of Education\u2019s research arm, canceling roughly $900 million in funding for research, including long-standing data collection in schools<\/a>. The administration further proposed ending<\/a> data collection on racial disparities in school discipline. The National Institutes of Health and National Science Foundation have purged projects<\/a> referencing terms including \u201crace\u201d and \u201cgender,\u201d gutting research<\/a> focused on diversity, equity, or inclusion.<\/p>\n \u201cIf we\u2019re cutting any data collection that helps us understand the problem, we\u2019re not going to fix it,\u201d said Paul Morgan<\/a>, director of the Institute for Social and Health Equity at SUNY-Albany, who led the studies on disparities in autism diagnoses. \u201cAll we\u2019re doing right now is making the situation worse.\u201d<\/p>\n The nation\u2019s influential federal autism panel<\/a> 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<\/a>.<\/p>\n HHS\u2019 Hilliard said the members \u201cbring decades of experience in autism research and clinical care\u201d and are committed to aligning \u201cfederal policy with gold-standard science.\u201d<\/p>\n Disability advocates say federal officials are focused on the wrong priorities.<\/p>\n \u201cAll of it creates chaos where chaos is not necessary,\u201d said Cameron Lynch, a former policy analyst for the Autistic Self Advocacy Network<\/a>.<\/p>\n Josette Smith\u2019s son 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. (Octavio Jones for KFF Health News)<\/p>\n Disability rights advocates fear the changes to special education oversight weaken the federal safety net for autistic students and others with disabilities, making these systems more confusing when families need help enforcing students\u2019 rights.<\/p>\n David Sitcovsky, Autism Speaks\u2019 vice president of advocacy, said families, especially those from marginalized communities, already often lack support for their children to receive a timely diagnosis or services in their school systems.<\/p>\n \u201cThe common thread across these issues is access,\u201d Sitcovsky said. \u201cIf their child\u2019s rights are not being upheld, do they have a clear path to get help?\u201d<\/p>\n Smith awaits a decision about her federal civil rights case, which she was told could take more than a year amid the backlog, as Ethan has started fourth grade. She 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.<\/p>\n 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.<\/p>\n 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.<\/p>\n \u201cAs a Black mom, you dare not complain about anything,\u201d Smith said. \u201cOnce you start advocating for your kids, it\u2019s a problem. But it\u2019s not these kids\u2019 fault that they have a disability.\u201d<\/p>\n Without timely assessments and interventions, studies show<\/a>, children of color with disabilities such as Ethan are disproportionately at risk of being funneled out of public schools<\/a> and into the juvenile and criminal justice systems.<\/p>\n Catherine Lhamon<\/a> led the Education Department\u2019s Office for Civil Rights in the Obama and Biden administrations and is now executive director of the Edley Center on Law & Democracy at the University of California-Berkeley School of Law. She said it\u2019s a scary time for families who want to protect their children\u2019s rights.<\/p>\n \u201cPeople speed if they don\u2019t see a police car,\u201d Lhamon said. \u201cIf they think that there\u2019s no one at the federal government watching them in school, we will see an increase in discrimination.\u201d<\/p>\n<\/div>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/em><\/p>\n This article<\/a> first appeared on KFF Health News<\/a> and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License<\/a>.<\/p>","protected":false},"excerpt":{"rendered":" At Chain of Lakes Elementary School in Winter Haven, Florida, Josette Smith\u2019s 9-year-old son, Ethan, gets to do what he loves most: crafts, math, and science. That is, when he isn\u2019t being pulled out of class. Ethan has autism and attention-deficit\/hyperactivity disorder. 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