‘Heartbreaking’ delays in autism diagnosis and treatment got even worse during pandemic

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.

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. Even though they do three more years of fellowship training than a general pediatrician does, developmental pediatricians typically earn less.

General pediatricians with training can also do assessments, but insurers often require a specialist’s diagnosis before paying for services, creating a bottleneck for families.

Some parents pay cash for an evaluation with a private specialist, worsening disparities between kids whose parents can afford to skip the wait and those whose parents cannot.

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.

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 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.

Sabrina Oxford of Dawson, in rural southwestern Georgia, had to take her daughter Jamelyn more than 150 miles to the Marcus Autism Center in Atlanta to get her diagnosed. “You don’t have any resources around here,” Oxford said.

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.

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.”