WAS H I NG TON D.C.— A staggering gap exists between the needs of autistic Oklahomans and the resources available to them. While Washington makes headlines with controversial claims about causes, Oklahoma families and advocates are focused on fighting for lifelong resources and acceptance in a system struggling to keep up.

Christi Newendorp, of Tulsa, a special education teacher and mother of two adult sons with autism, described this crisis in personal terms, highlighting the systemic failures: ‘We need programs and services after high school that do not currently exist in Oklahoma. We need improved health care and access to therapies. We need housing and education options.’

The state of Oklahoma has reported that 1 in 51 children have been identified with Autism Spectrum Disorder (ASD). This rate is mirrored in state health programs, where the Oklahoma Health Care Authority reports that the rate of autism in the state’s Sooner-Care program increased from 0.4% of members in 2011 to 0.9% in 2020, a trend that continues to accelerate.

This rapidly increasing prevalence clashes with systemic barriers to care, including agonizingly long waiting periods for a formal diagnosis and a lack of resources for adults.

Autism Spectrem Disorder is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. The rising numbers are largely driven by a major diagnostic shift: The release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM5) in 2013 unified separate categories (like Asperger’s Syndrome and more) into a single diagnosis of ASD. This shift is widely credited as the primary driver for the rising prevalence numbers, as it correctly identifies previously missed populations.

Carley Marissa Dummitt, engagement manager for the Autism Foundation of Oklahoma, said improved testing is revealing more cases that were previously missed, particularly in specific populations. This is especially true for females, who have historically been diagnosed at a much lower rate than males due to a phenomenon often called ‘masking’ or ‘camouflaging.’

“For females, the autistic experience is different,” Dummitt noted. “Females are often misdiagnosed with other things because the person diagnosing them isn’t educated on autism.” She also points to the persistent stereotype that autism excludes high intelligence, “there is that stigma of if you are gifted, you can’t have autism. Well, no. Yes, you can.” The evolving diagnostic landscape has broadened the definition of the “spectrum,” ensuring more individuals with varied presentations are correctly diagnosed.

The local crisis takes place against a backdrop of intense national focus. On Monday, September 22, President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. announced a rise in autism rates—surging nearly 400% since 2000 and affecting an estimated 1 in 31 American children—to be an “epidemic” requiring “bold new actions.”

The announcements included a warning urging pregnant women to avoid the drug acetaminophen (Tylenol), citing inconclusive studies suggesting a ‘potential association’ with adverse neurodevelopmental outcomes, and the issuing of a notice for a label update on the B-vitamin-based drug leucovorin as a potential therapeutic pathway for some children with cerebral folate deficiency. Kennedy Jr. also recently alluded to a possible link between early circumcision and autism rates.

The announcement immediately drew fire from mainstream medical groups and advocacy organizations, which defended Tylenol as one of the only safe treatments for fever during pregnancy and warned against unproven claims. The Autism Society of America expressed ‘deep concern’ that ‘unfounded claims’ about cause and treatment risk ‘retraumatizing autistic individuals and families, stigmatizing mothers, and diverting attention from what truly matters: ensuring Autistic people have access to the supports they need across their lifespan.’

Dr. Jeffrey Morris, director of the Division of Biostatistics at the University of Pennsylvania, echoed this concern, stating the administration’s presentation ‘overstated both its potential impact and the strength of the evidence’ regarding Tylenol. Morris noted that existing literature is mixed, and the current evidence ‘does not justify label warnings or blanket discouragement of appropriate short-term use in pregnancy.’

For Christi Newendorp, whose children are now young adults, the focus on causation is secondary to the immediate, practical needs of her family. She is ‘much more interested in federal and state policy that helps families like mine cope with the problems that profound autism creates for our family.’

Local organizations, like the AFO, have shifted the conversation toward acceptance and lifelong inclusion. Dummitt rejects the perception of autism as a disease, stating plainly that “no one chose to be autistic. It isn’t a disease. It’s a way of life.”

The AFO’s mission extends to often-overlooked areas like public health and safety. Dummitt explained that “autistic individuals are seven times more likely to have an interaction with a first responder than a neurotypical person.” The AFO provides specialized training to police, paramedics, and court officials so that professionals can mitigate any negative experiences.

Beyond safety, the AFO focuses on the high rates of co-occurring conditions and the critical need for support. Suicide is the leading cause of non in-accidental or natural death for autistic people, and roughly 40% of autistic individuals also have depression. Perhaps the most significant barrier to a full life is economic: national studies consistently show the unemployment rate for autistic adults is around 85%.

Despite the controversy, the increased visibility has prompted positive shifts. Dr. Michelle DeBerry of the Oklahoma Autism Network noted that the focus has led to an ‘increase in public attention to autism, raising visibility and leading more people to learn about the condition.’ DeBerry adds that ‘representation changes perception. When autistic voices are visible in media, education, and leadership, society gains a fuller picture of autism — not as a tragedy or mystery, but as a form of human diversity.’

As national leaders spark controversy with announcements of causes and new therapies, the tireless work of organizations, doctors, teachers, and families in Oklahoma confirms a fundamental truth: truly confronting the autism crisis demands not only scientific research into causation but concrete systemic changes to ensure support, dignity, and a sense of belonging for every individual on the spectrum.

“I hope that people with autism know and can look inside themselves and understand that their life has value, and that they should be alive,” Dummitt said.

Gaylord News is a reporting project of the University of Oklahoma Gaylordd College of Journalism and Mass Communication. For more stories by Gaylord News go to GaylordNews.net.