A couple’s quest for treatment for their son with ASD faces repeated hurdles

When Sebastian Rios was very young, he barely spoke. “Don’t worry,” his pediatrician told Amparo and Victor Rios, Sebastian’s parents. Children who grow up in homes where both Spanish and English are spoken are sometimes slower to develop their language skills, she said.

Plus, Sebastian was developing well in other ways: when he was just 18 months old, for example, he could identify the magnetized letters of the alphabet on the fridge in their home in Bronxville, a short train ride away. north of New York.

But by the time Sebastian was just over 2, his skills didn’t keep up with those of other kids his age: He only spoke simple words, like “mom” and “dad”, and had interaction issues. with people, says Amparo Rios. He didn’t know how to play with other children and didn’t care to show people his toys or share them. He was making less and less eye contact.

The Rios feared their son had autism, but didn’t know how to get a definitive diagnosis for his lagging skills or how to get help.

According to federal estimates, one in 44 children has been diagnosed with autism spectrum disorder by age 8. It is an intellectual disability that affects people’s social and communication skills and their behavior to varying degrees. About a third of children with autism also have intellectual disabilities, according to the federal Centers for Disease Control and Prevention.

As awareness of the autism spectrum has grown, new diagnostic criteria covering milder forms of the disability have helped bring attention to the needs of children, like Sebastian, who can benefit ongoing treatment and need significant support to attend school and participate in activities. love sports.

Autism cannot be diagnosed with a blood test or a scan. 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 in one-on-one sessions. These may require out-of-pocket payments as insurance companies impose stricter coverage standards. Parents can wait months for appointments with a developmental pediatrician or other specialists.

“There are significant shortages of providers, especially with the number of children diagnosed or suspected of having autism these days,” said Kelly Headrick, senior director of state government affairs and advocacy at base at Autism Speaks, a research and advocacy organization.

As a result, the Rios have found that getting a diagnosis and any subsequent help can be a long, winding, nerve-wracking and sometimes expensive road.

Although parents may notice developmental issues during a child’s first 18-24 months, children don’t get diagnosed with autism, on average, until they are over 4 years old, studies show. . This means missed opportunities for intervention: research shows that early treatment of autism yields better results.

Wanting to get help for Sebastian, the Rios sought help from their pediatrician when their son was 2 years old. The doctor referred them to their school district, so that Sebastian could be evaluated for special education services. But he was too young for the district to help him.

The Rios learned that children under age 3 must connect to services through the federally mandated Early Intervention Program that requires states to provide services to children with developmental delays or disabilities.

The family waited over three months for the battery of tests and appointments to be completed, and the gap between Sebastian’s development and that of other children his age continued to widen. In addition to his language and social development delays, he struggled with imaginative play and was intensely self-directed, fully focused on what he wanted to do when he wanted to.

Although the staff members of the early intervention program lacked the specialist skills necessary to provide a medical diagnosis, they recommended that Sebastian begin occupational therapy, speech therapy and applied behavior analysis, a technique widely used in which therapists work extensively with children who have autism using positive reinforcement to achieve goals related to communication, learning, motor and other skills. For example, a therapist may encourage a child to play a game the therapist has chosen before playing the game the child prefers. If the child does this, he might get praise from the therapist or get something else he enjoys, like a toy or a playground.

The early intervention program paid someone to go to the Rios’ home six hours a week for ABA therapy. But Amparo Rios said the therapist wasn’t focusing on Sebastian’s issues, such as transitioning from one activity to another without melting down, so she wanted another ABA therapist.

The Rios had health coverage through a plan administered by Trustmark, which established coverage policies in consultation with Amparo Rios’ employer, a local college. But Sebastian needed a medical diagnosis of autism from a provider the plan considered a qualified clinician before paying for ABA therapy – a diagnosis Sebastian still didn’t have at age 3. shorthand for self-stimulating behavior, often repetitive movements or sounds that help calm or comfort people with autism. In Sebastian’s case, he groaned.

Since there is no single standardized test required to diagnose the condition, providers use different tools – which some specific insurers will not accept.

The family took Sebastian to a neurologist for a checkup, but she said they weren’t sure he had autism. “We felt so rudderless,” Amparo said. “We didn’t know where to turn to diagnose him or figure out what was wrong with him.”

Six months later, in September 2020, the family found a clinical psychologist who specializes in autism spectrum disorders and is part of their network of providers. She tested Sebastian for three months, assessing his cognitive abilities and ability to complete tasks, follow instructions, and pay attention, among other things. The pandemic slowed medical care, and in May 2021 she finally diagnosed Sebastian, then 4, with Autism Spectrum Disorder Level 1, the least limiting form, and recommended that he restart ABA therapy. .

The delay cost Sebastian. His pacing behaviors worsened and he made eye contact with others less frequently. “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 would become of him.

Two years after the Rios noticed their son’s atypical behaviors, they enrolled him in individual ABA therapy for 15 hours a week at a center near their home. It was as if the pieces were finally falling into place. Sebastian’s language skills were improving with speech therapy, but he was very independent and still not good at making eye contact. He sometimes wandered alone, a terrible risk to his safety, and couldn’t use the bathroom on his own.

Amparo’s health plan administrator, Trustmark, confirmed that ABA therapy was covered, with a co-payment 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 such as eye contact and using the bathroom on his own.

The relief was short-lived.

Last September, the Rios began receiving notices from the health plan administrator saying he would not pay for therapy because it was not medically necessary. Unfortunately, the therapist who provided the diagnosis had not screened Sebastian using the Autism Diagnostic Observation Program (ADOS-2), a popular test.

Sebastian’s developmental pediatrician sent a letter to the health plan explaining the need, and the ABA therapy provider sent clinical notes from Sebastian’s sessions.

It did not work. Trustmark refused to pay for ABA therapy, and in February the Rios discontinued it. Now they face more than $11,000 in bills for the sessions. Without the therapy, their son’s progress slows, Amparo said. He is more restless and has been 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.”

The Rios appealed the denial but lost. An independent reviewer found in May that ABA services were not medically necessary and questioned whether Sebastian had autism. He 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 replaced her health coverage with her husband’s. They started a new assessment process for Sebastian, now 5 years old. They paid a vendor $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 again to enroll Sebastian in ABA therapy using coverage from the new health plan.

“You want your child to be assessed as soon as possible to get as much help as possible,” Amparo said. “It’s a critical moment in his development, and I just feel down.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polls, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.

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