When James Byrne-Martinez was four years old, his preschool school and his parents noticed that he had a speech delay and appeared not to follow instructions. He was also a sensory seeker. So he just touched things.
“I took him to the grocery store and he ran his hand through the rows of glass bottles,” said his father, Kevin Byrne. “It was a nightmare.”
But James’ doctor wasn’t too concerned. He was diagnosed with sensory processing disorder and that was it.
At the time, the family lived in Arizona. When they moved to San Marcos and James started attending his first grade, his teacher thought it was more than that. She thought he should be tested for autism.
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For her mother, Ana Martinez, the proposal was a relief. She has been wanting more tests for some time.
“It was all very confusing,” she said. “We were trying to figure things out and find the correct diagnosis. Is it a diet? Is it a correction? There was a lot of anguish about it.”
The family took James to the Dell Children’s Developmental Behavioral Pediatrics Comprehensive Autism Team for evaluation.
The team includes developmental and behavioral pediatricians, psychologists, social workers, psychological testing specialists, and speech therapists. We specialize in children like James who are more difficult to diagnose. The team spends her day observing, interviewing parents and psychological testing.
Children are often under the age of four. The team likes to see children as young as possible for early intervention, but they also see children as young as 14.
Most referrals are from pediatricians. But it’s also offered by neurologists who haven’t been able to make a definitive diagnosis, and by nonprofit infant intervention programs like Any Baby Can and Easter Seals.
“We take the harder cases,” said Dr. Sheri Ravenscroft, a developmental and behavioral pediatrician. “The difference is the ratings we provide.”
Teams meet to make diagnoses and sort through diagnostic dilemmas. In some cases, multiple diagnoses and additional tests may be done. They work closely with genetics and neurology to rule out other conditions that may be causing the behavior.
That is, the results are not always diagnostic of autism. Sometimes completely different conditions are revealed.
A comprehensive approach has reduced new patient wait times by almost 14 months, compared with previously more than two years for testing and diagnosis. Without diagnosis and treatment for 2 years, missed treatment opportunities can make a big difference in outcomes.
The test is registered with insurance, which can save families over $3,000 in out-of-pocket expenses.
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starting with a diagnosis
“We say diagnosis is just the tip of the iceberg,” Ravenscroft said.
The reason is that this team also helps families understand what the diagnosis means and how to make sense of the diagnosis and their child’s behavior.
Social worker Caroline Turner likes to enroll parents in the Autism 101 program. This program is her 6-week group program that includes one 90-minute session with her per week.
The program aims to help parents better understand how their child’s brain works, navigate available resources and understand terminology. It also teaches interventions that can be used at home.
Plus, Turner includes an entire session on self-care for parents. “Really?” At the same time, this is very important. they need to take care of themselves. ”
Social work teams connect parents to nearby resources, including a range of treatments and support. The team will follow up regularly to see any new resources you may need or the support your child needs at school.
On the medical side, Ravenscroft said he oversees medical administration to help with sleep, mental health double diagnosis or behavior.
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living with a diagnosis
For James’ family, the diagnosis ended turmoil.
“All the pieces fit together,” Byrne said. “James’ personality makes more sense. Who is James?”
For Martinez, working with Turner and going through Autism 101 was really important in understanding his son and building community. “I’m not saying it was easy, but it opened up a whole world,” Martinez said.
The team’s support has been helpful, Byrne said. After the diagnosis, “100,000 questions will befall you.” Members of the team “know what they’re talking about and how to talk to parents who are completely crazy,” he said.
Byrne, for example, wanted to know what the diagnosis meant for James as a child, but asked, “What will it mean for him when he’s 40?”
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They found out that James’ trajectory was different than they originally thought. “James will go his separate ways,” Byrne said.
Autism 101 also helped the family figure out how to have conversations about James’ autism with him, his sister, and his extended family.
Today James is 9 years old and loves playing video games and graphic novels. He loves all things Mario: Mario video games, Mario bed sheets, Mario shirts, Mario backpacks, Mario curtains. “If I let him talk about it, it would be a two-hour conversation,” Byrne said.
His parents learned a lot about how to give transition time between tasks, how to predict behavior, and how to talk before events happen. “He doesn’t have to do everything,” Martinez said. “We don’t force him. I don’t think he has to do anything.”
They ask themselves, “What is he feeling? We stand by him.”
“We’re parenting with a lot of patience,” Martinez said.
They follow their mantra: choose your battle. Get ready. Break down one thing at a time.
They have fully integrated autism into their lives. Even James’ sister would remind people, “James needs more time. He’s autistic.”
She is even asked, “Why am I not autistic?” She sees it as a positive thing, Martinez said: “We took it from Autism 101.”
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