“If we rely solely on experts, we are prepared for failure because we are understaffed. We need insurance companies to be involved,” Dr. said. Sheriff TalamanPediatric neurologist and president of the Orange County, California chapter of the American Academy of Pediatrics.

Even in metro areas, getting a child to make an appointment can take months. “We can’t get these families on board fast enough,” Dr. Alan Weintraub, a developmental pediatrician in suburban Atlanta. “Heartbreaking.”

Some parents pay cash to have private experts assessed, exacerbating the gap between children whose parents are able to skip the wait and children whose parents cannot.

Once a child is diagnosed, many face equal or longer wait times to access autism treatment, including applied behavior analysis, a process designed to improve social, communication and learning skills. These courses may take more than 20 hours per week and last over a year. ABA technology there are some criticismsbut the American Academy of Pediatrics says Most evidence-based autism treatment models Based on ABA principles.

Access to this treatment is largely dependent on insurance coverage — and for many families, how well Medicaid pays. Georgia’s Medicaid program reimburses the ABA well, while Missouri’s low wages have led to a scarcity of options there, Sohl said.

In California, where Medicaid reimbursement rates vary by county, wait times for ABA vary from about 3 months to 12 months. In rural northern parts of the state, few providers work and some families wait years.

In the first year of the pandemic, Claire Hayes of Orange County was excited about the ABA therapist working with her son. But in January 2021, the therapist resigned and went back to school. Her company sent others. Hise had to train each new therapist to work with her son, a difficult process that always took over a month. “It’s a special relationship, and every child with autism is an individual,” Hise said. “It takes time.”

By then, they were out of the house, replaced by another person no more than four to six weeks later. Sometimes, the family waited weeks for a change.

Hayes tried to switch to another company, but they both had a six-month waitlist. “He’s far behind,” Hayes said. “It’s really been a year where I feel like we’ve lost.”

This mean age at diagnosis About 4 years old in the U.S., but black and Latino children are on average Evaluated later than white children.

“The impact on families who have to wait for diagnosis or treatment can be devastating,” said Kristen Jacobson, founder of the California-based advocacy group Autism Worth Equal Insurance Foundation. “Their gut knows that something is terribly wrong and there’s help there, but there’s nothing they can do about it.”

Araceli Barrientos helps run an autism support group in Atlanta for immigrant families whose language barriers can present an additional barrier. It took her more than a year to get her daughter Leslie diagnosed, and another two years to get further treatment.

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

Behavioral pediatrician Dr. Michelle Zeanah draws families from 60 major rural counties to her clinic in Statesboro, Georgia. “There is a severe shortage of people willing and able to make an autism diagnosis,” she said.

Buying insurance for autism treatment can be another frustrating process. Clerical errors or missing paperwork may trigger denial of treatment. Approval by insurance companies can be especially difficult for older children, who are less likely to receive treatment services than younger children, Dr. london womana child and adolescent psychiatrist at Augusta University in Georgia.

Many children with autism also require speech, occupational, and physical therapy, all of which are often more readily available than behavioral therapy. But even so, Weintraub said, insurers will fight back: “They really dictate how much service you can have. Literally, these families are going to hit barriers every moment.”

David Allen, a spokesman for the insurance industry trade group AHIP, formerly American Health Insurance Plans, said insurers often require prior authorization to ensure autism services are “medically necessary and evidence-based” and that patients are “provided by” Appropriate education and training for the treatment of autism.”

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

“He did a great job,” she said. “My son can’t talk. Now he’s talking to my ears.

Kaiser Health News is a national health policy news service. It is an independent editorial project of the Henry J. Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.