Wylie James Prescott, 3, had to wait more than a year after his autism diagnosis to begin behavioral therapy, even though research shows early treatment of autism can be crucial for children's long-term development.
'Heartbreaking' delays in autism diagnosis and treatment got even worse during pandemic
His mother, Brandie Kurtz, said his therapy wasn't approved through Georgia's Medicaid program until recently, despite her continued requests. "I know insurance, so it's even more frustrating," said Kurtz, who works in a doctor's office near her home in rural Wrens, Georgia.
Those frustrations are all too familiar to parents who have a child with autism, a complex lifelong disorder. And the pandemic has exacerbated the already difficult process of getting services.
This comes as public awareness of autism and research on it have grown and insurance coverage for treatment is more widespread. In February, Texas became the last state to cover a widely used autism therapy through Medicaid. And all states now have laws requiring private health plans to cover the therapy, applied behavior analysis.
Yet children from Georgia to California often wait months — and in many cases more than a year — to get a diagnosis and then receive specialized treatment services. Therapies that can cost $40,000 or more a year are especially out of reach for families who don't have insurance or have high-deductible health plans. Children from minority communities and those who live in rural areas may face additional barriers to getting help.
"You would never allow a kid with cancer to experience these waits," said Dr. Kristin Sohl, a pediatrician at University of Missouri Health Care and chair of the American Academy of Pediatrics' Council on Children With Disabilities Autism Subcommittee.
During the early months of the covid-19 pandemic, many families canceled in-home services, fearing infection. Virtual therapy often didn't seem to work, especially for nonverbal and younger children. With fewer clients, some providers laid off staff or shut down entirely.
And treatment services always face high turnover rates among the low-wage workers who do direct, in-home care for autism. But covid made the staffing problem worse. Companies now struggle to compete with rising wages in other sectors.
The Centers for Disease Control and Prevention estimates that autism affects 1 in 44 U.S. children, a higher prevalence rate th