American Academy of Pediatrics says that most evidence-based autism treatment models are based on ABA principles.

Accessing such treatment largely depends on insurance coverage – and for many families how well Medicaid pays. The Georgia Medicaid program reimburses well for ABA, Georgia doctors said, while Missouri's pay is low, leading to a scarcity of options there, Sohl said.

In California, Medicaid reimbursement rates vary by county, and wait times for ABA range from about three to 12 months. In the rural northern reaches of the state, where few providers work, some families wait years.

Diagnoses are typically done by developmental-behavioral pediatricians, psychologists, psychiatrists, and neurologists, all of whom are in short supply. The shortage of developmental pediatricians is especially acute.

During the first year of the pandemic, Claire Hise of Orange County was thrilled with the ABA therapist who worked with her son. But in January 2021, the therapist quit to go back to school. The company she was working with sent others. Hise had to train each new therapist to work with her son, a difficult process that always took more than a month. "It's a special relationship, and each kid with autism is an individual," Hise said. "It takes time."

By then, they were out the door, replaced by another after no more than four to six weeks. Sometimes the family waited weeks for a replacement. Hise tried switching to another company, but they all had a six-month waitlist. "He's already so far behind," Hise said. "It's really a year I feel we've lost."

The average age of diagnosis in the U.S. is about 4 years old, but Black and Latino children on average are evaluated later than white kids. "The impact on families having to wait for diagnosis or treatment can be devastating," said Kristin Jacobson, founder of the Autism Deserves Equal Coverage Foundation, an advocacy group in California. "They know in their gut something is seriously not right and that there is help out there, and yet they are helpless to do anything about it."

Araceli Barrientos helps run an autism support group in Atlanta for immigrant families, for whom language barriers can cause additional snags. It took her over a year to get her daughter, Lesly, diagnosed and two more years to secure further treatment.

Dr. Michelle Zeanah, a behavioral pediatrician, draws families from 60 mostly rural counties to her clinic in Statesboro, Georgia. "There's a massive shortage of people willing and able to do an autism diagnosis," she said.

Getting insurance to pay for autism treatment can be another frustrating process for families. Therapy denials can be triggered by clerical errors or missed paperwork. Insurer approvals can be especially difficult for older children, who can be less likely to get treatment services than younger ones, said Dr. Donna Londino, a child and adolescent psychiatrist at Augusta University in Georgia.

Many children with autism also need speech, occupational, and physical therapy, all of which are generally easier to secure than behavioral therapy. But even then, Weintraub said, the insurers push back: "They really dictate how many services you can have. These families, literally, meet obstacles at every turn."

David Allen, a spokesperson for AHIP, an insurance industry trade group formerly known as America's Health Insurance Plans, said insurers often require prior authorization to ensure that autism services are "medically necessary and evidence-based" and that patients are treated by "providers with appropriate education and training in treating autism."

Tracy-Ann Samuels of New York said she paid out-of-pocket for speech and occupational therapy for her son, Trey, now 15. Two years ago, after 18 months on a waiting list, he finally got ABA services covered by insurance.

"He's doing so great," she said. "My son was nonverbal. Now he's talking my ear off."

ABOUT THE AUTHORS:

Andy Miller, interim Southern Bureau Editor, has been a health care journalist for 29 years. Miller graduated from Duke in 1973 and received a master's in education from Duke in 1979. He was a social studies teacher and basketball coach before switching careers to journalism. He entered the master's in journalism program at University of North Carolina in 1984. He was hired by the Atlanta Journal-Constitution, where he had editing and reporting positions before switching to health care in 1992. He covered that beat until 2009, when he retired. He launched Georgia Health News in 2010, where he continued as editor and CEO until Georgia Health News joined KHN.

Jenny Gold, Senior Correspondent, covers the health care industry, the Affordable Care Act, and health care disparities for radio and print. Her stories have aired on NPR and been published by USA Today, The Washington Post, and many other news organizations. She was previously a Kroc Fellow at NPR, where she covered health and business, and a broadcast associate at the CBS Evening News. She is a graduate of Brown University.

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