When Sebastian Rios was young, he hardly spoke. “Don’t worry,” his pediatrician told Sebastian’s parents, Amparo and Victor Rios. Children who grow up in families where both Spanish and English are spoken are often slower to develop language skills, he said.
Also, Sebastian was developing well in other ways: When he was just 18 months old, for example, he could identify the magnetic letters of the alphabet on the refrigerator at their home in Bronxville, a short train ride north of New York City.
But by the time Sebastian was a little over 2 years old, his skills weren’t keeping up with other kids his age: He could only say simple words like “mommy” and “grandpa” and had trouble communicating with people, Amparo Rios said. He didn’t know how to play with other children and didn’t care about showing people his toys or sharing them. He minimizes eye contact.
The Rioses were worried their son might have autism but didn’t know how to get a specific diagnosis or how to help him account for his lagging skills.
According to federal estimates, one in 44 children is diagnosed with an autism spectrum disorder by age 8. It is a developmental disability that affects people’s social and communication skills and their behavior to varying degrees. According to the federal Centers for Disease Control and Prevention, about one-third of children with autism also have an intellectual disability.
As awareness of the autism spectrum grows, new diagnostic criteria that cover milder forms of the disorder have helped draw attention to the needs of children, like Sebastian, who may benefit from ongoing treatment and may need significant assistance attending school and participating in activities. Like playing.
Autism cannot be diagnosed with blood tests or scans. Instead, professionals typically rely on in-depth interviews with parents or caregivers about a child’s development, as well as assessments of a child’s behavior during one-on-one sessions. They may require out-of-pocket payments because insurance companies impose strict coverage standards. Parents may wait months for an appointment with a developmental pediatrician or other specialist.
“There is a significant provider shortage, especially with the number of children diagnosed or suspected of having autism these days,” said Kelly Hedrick, senior director of state government affairs and grassroots advocacy at Autism Speaks, a research and advocacy organization.
As a result, the Rioses discovered, a diagnosis and any subsequent help can be a long, winding, nerve-wracking and sometimes expensive road.
Although parents may notice developmental problems in a child’s first 18 to 24 months, children on average are not diagnosed with autism until they are more than 4 years old, studies show. This means missed opportunities for intervention: Research shows that early treatment of autism leads to better outcomes.
Desperate to get help for Sebastian, the Rioses asked their pediatrician for help when their son was 2. The doctor referred them to their school district, so Sebastian could be evaluated for special education services. But he was too young to help the district.
Rioce learned that children younger than age 3 are required to connect to services through federally mandated early intervention programs that require states to provide services to children with developmental delays or disabilities.
The family waited more than three months for a battery of tests and appointments to be completed, and the gap between Sebastian’s development and other children his age continued to widen. In addition to his language and social developmental delays, he struggled with imaginative play and was intensely self-directed, focusing entirely on what he wanted to do when he wanted to do it.
Although the early intervention program staff did not have the specialized skills necessary to make a medical diagnosis, they recommended that Sebastian begin occupational therapy, speech therapy, and practical behavior analysis, a widely used technique in which therapists work closely with children to improve communication, learning, motor, and Has autism using positive reinforcement to achieve goals related to other skills. For example, a therapist might encourage a child to play a game that the therapist has chosen before playing the child’s favorite game. If the child does, he may be praised by the therapist or receive something he values, such as a toy or playground.
The Early Intervention Program pays for six hours a week of home visits to Rioce to perform ABA therapy. But Amparo Rios said the therapist didn’t focus on Sebastian’s problem areas, such as without transitioning from one activity to another, so she sought a different ABA therapist.
The Rioses had health coverage through a plan administered by Trustmark, which determined the coverage policy in consultation with the local college Amparo Rios’ employer. But Sebastian needed a medical diagnosis of autism from a provider the plan considered a qualified physician before paying for ABA therapy — a diagnosis Sebastian didn’t yet have at age 3. Around this time, the Rioses noticed that their son was “stimulating,” shorthand for self-stimulating behaviors, often repetitive movements or sounds that help calm or comfort people with autism. As for Sebastian, he made a roaring noise.
Because no single standardized test is required to diagnose the condition, providers use a variety of tools — some of which certain insurers won’t accept.
The family took Sebastian to a neurologist for an exam, but he said he wasn’t sure he had autism. “We felt very rudderless,” Amparo said. “We didn’t know who to go to to diagnose him or figure out what was wrong with him.”
Six months later, in September 2020, the family found a clinical psychologist who specialized in autism spectrum disorders and was in their provider network. She tested Sebastian for three months, assessing his cognitive abilities and his ability to attend to tasks, follow instructions and pay attention, among other things. The pandemic slowed medical care, and in May 2021 he finally diagnosed 4-year-old Sebastian with Level 1 Autism Spectrum Disorder, the least restrictive form, and recommended he start ABA therapy again.
The delay cost Sebastian. His agitated behavior worsened and he made less frequent eye contact with others. “We had very mixed feelings about the diagnosis,” Amparo said. “It was a relief that we had a diagnosis that we could rely on for medical care. But it was mixed because as parents we didn’t know what he would grow up to be.”
Two years after the Rioses noticed their son’s unusual behavior, they enrolled him in 15 hours a week of individual ABA therapy at a center near their home. It seemed as if the pieces were finally falling into place. Sebastian’s language skills were improving due to speech therapy, but he was very self-directed and still not good at making eye contact. He sometimes walked around on his own, a terrible safety risk, and couldn’t use the bathroom by himself.
Amparo’s health plan administrator, Trustmark, confirmed that ABA therapy was covered, with a copayment of $25 per session.
It was difficult for Sebastian at first, Amparo said, as he worked with a therapist to learn how to be less rigid and less focused on just doing what he wanted to do. But he gradually improved in skills like making eye contact and using the bathroom on his own.
The relief was short-lived.
In September, Rioce began receiving notices from the health plan administrator that it would not pay for the therapy because it was not medically necessary. Unfortunately, the therapist who provided the diagnosis did not screen Sebastian using the Autism Diagnostic Observation Schedule (ADOS-2), a highly respected test.
Sebastian’s developmental pediatrician sent a letter explaining the need for a health plan and the ABA therapy provider sent clinical notes from Sebastian’s sessions.
It didn’t work. Trustmark refused to pay for the ABA therapy, and Rioce discontinued it in February. Now they face more than $11,000 in bills for the session. Without therapy, their son’s progress is slipping, Amparo said. He is increasingly agitated and distracted and disruptive in his kindergarten class, needing constant reminders to stay focused.
Trustmark declined to comment for this article.
“It’s really frustrating” for the parents, Amparo said, “but ultimately it’s very sad for my son.”
Rioces appealed the denial but lost. An independent reviewer found in May that ABA services were not medically necessary and questioned whether Sebastian had autism. She noted that Sebastian had not been screened using the ADOS-2 test and said he needed it.
It was the last straw. Amparo quit her job, and the family switched their health coverage to her husband’s plan. They started a new evaluation process for Sebastian, now 5. They paid a provider $500 to administer the ADOS-2 test, which confirmed his autism diagnosis in June. Now, three years after they started looking for help, they’re trying to enroll Sebastian in ABA therapy again, using the new health plan’s coverage.
“You want your child to be evaluated as soon as possible to get as much help as possible,” Amparo said. “It’s an important time in his development, and I’m just beat.”
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