UF experts tell education committee autism prevalence is rising and diagnostic delays persist

Committee on Education Pre K–12 Chair Senator Simon heard presentations from University of Florida specialists and the regional Centers for Autism and Related Disabilities on the growing number of students identified with autism and the gaps in diagnosis and follow-up services.

Speakers told lawmakers the number of children identified with autism has risen sharply in recent decades, that no single biological test exists to confirm the condition, and that families often face long waits for medical diagnosis and subsequent supports.

Dr. Anne Marie Orlando, director of the UF Center for Autism and Related Disabilities (CARD), told the committee autism is "a lifelong neurodevelopmental disability" that primarily affects social communication and occurs now in about "1 in 36 children," up from about 1 in 150 around 2000. She said the increase is partly from greater awareness, broader diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM), and improved access to services, but that many experts believe some of the rise represents a real increase in incidence.

Orlando described CARD as a state-funded, nonresidential network of university-based centers that provides free consultation, training and family supports to people with autism across age groups. She said CARD does not duplicate community services such as screening or therapy but offers technical assistance to schools, maintains local databases of providers, attends autism clinics to connect families with educational supports, and provides professional learning to educators and other providers.

Dr. Carrie Peters, administrative director of the UF Health Center for Autism and Neurodevelopment, told the committee the university program focuses on clinical care, training, research and transition-to-adulthood services and on coordinating across many medical and educational specialties. Peters said a UF chart review of 439 patient records found an average delay of 181.7 days between referral for testing and receipt of an autism diagnosis. After targeted training and process changes in one clinic, she said the referral-to-diagnosis interval dropped in that site to a range of about 8.6 to 73 days.

Peters said the primary cause of the long waits is insufficient workforce capacity: too few clinicians — psychologists, pediatricians and others — trained or confident in making autism diagnoses. She described steps UF has taken, including training psychiatry fellows to make diagnoses at intake, using patient navigators who help families move through medical and educational systems, and a Department of Health-funded behavioral health hub that offers psychiatric consultation to rural providers.

Committee members asked about rural access and coverage. Peters said she expects delays are longer in rural areas because of fewer clinicians and fewer behavior-therapy providers. On insurance, Peters said diagnostic evaluations and therapies such as speech, occupational and physical therapy are generally covered by Medicaid or commercial insurance, though some private providers do not accept Medicaid. She said CARD services are free. Peters added that school-based behavioral supports are funded in mixed ways: some districts hire behavior analysts directly, and some medically necessary behavioral therapies are covered by insurance depending on context.

Committee members also raised employment, transition and post-diagnosis support. Orlando and Peters emphasized multidisciplinary coordination — medical, educational and family supports — and pointed to early screening recommendations (American Academy of Pediatrics: 18 and 24 months) and community resources such as Early Steps and school-based screening programs.

The presentations gave lawmakers specific evidence about rising autism identification and the system gaps that delay diagnosis and services, including workforce shortages and uneven rural access. Several presenters urged expanding training for clinicians and primary-care providers and strengthening coordination between medical and school systems so families can move more quickly from referral to diagnosis to services.

The committee did not take formal action; presenters provided contact information and said they would make materials available to lawmakers for follow-up.