Nicky’s Story

NickyIf you met 12-year-old Nicholas (“Nicky”), you might not know he has autism. He’s outgoing and social, attends mainstream school, has friends through his church and plays several sports: football, wrestling and community basketball.

Nicky was diagnosed with autism at 15 months through the Center for Autism Research (CAR) at Children’s Hospital of Philadelphia (CHOP). As a baby, he qualified for a research study called the Infant Brain Imaging Study, which evaluates the younger siblings of children with autism. At that time, Nicky was the youngest of four boys — three of whom had already been diagnosed with autism.

‘We knew it was something else’

Nicky’s oldest brother, James, was diagnosed with autism through community behavioral health services. Prior to his diagnosis at age 5, he had been misdiagnosed several times. His parents, John and Nicole (who works as an autism support teacher), knew that James’s behavior was not consistent with ADHD or ODD (oppositional defiant disorder). Instead, James presented with several behaviors typical of autism, including sensory issues, difficulty with changes in his schedule and “stimming” (self-stimulation, such as arm flapping).

“We knew it had to be something else for him,” says Nicole. “This is what happens when a child is misdiagnosed. You don’t get the right services for them.”

When James finally received a correct diagnosis, everything changed for the family. They were able to implement several of the tools Nicole already knew through her experience working with autistic children, including sticker charts and picture schedules. They even changed school districts right before James started kindergarten, so that he would have access to a school with autistic support, which would better help him reach his full potential.

Right place, right time

Though Nicole and John never expected to have another child with autism, their second oldest, Dominic, showed several of the same behaviors and was also nonverbal. Diagnosed before 3 years old, “Dom” was thankfully able to receive occupational therapy (OT) and speech therapy through the local Intermediate Unit as well as support through Head Start.

“Kids who have mild autism can have a difficult time receiving community and educational support services,” says Nicole. “I wasn’t going to let my kids fall through the cracks.”

Nicole was 20 weeks pregnant with Nicky when she saw a CAR flier at Head Start. The flier was advertising the Infant Brain Imaging Study and looking for participants no more than 20 weeks gestation. With two children already diagnosed with autism and her third child, Johnny, beginning to present with similar behaviors, Nicole decided to participate in the study. Johnny was almost 2 when he was diagnosed with autism.

Infant Brain Imaging Study

Led by Juhi Pandey, PhD, a pediatric neuropsychologist at CAR, the Infant Brain Imaging Study evaluates the physical structure of the brains of babies who have older siblings with autism. The study has found that there are physical differences between the brains of children with autism and the brains of neurotypical children. These changes begin to occur as early as 6 months. A participant of the study, Nicky was diagnosed with autism at 15 months old, making him eligible for support services well before his older brothers had been.

“I do wonder if things would’ve been easier for James if he’d been diagnosed earlier,” says Nicole. “Maybe he would’ve had fewer tantrums. Maybe we would’ve been able to help him sooner.”

With continued community and school services, as well as care from CHOP’s Developmental and Behavioral Pediatrics, Nicky and his brothers have continued to progress. They are all in mainstream classrooms, supported by caseworkers and IEPs (Individualized Education Programs). James, now 21, is a junior at West Chester University, where he majors in computer science. The boys — and their neurotypical sister, Sophia — are all very close.

Though CAR offers a wealth of support services for families of children with autism, Nicole and John found the support they needed in their church, where they have been heavily involved for the last 10 years.

Looking ahead to her boys’ futures, Nicole hopes that efforts in the behavioral health community will expand support services for young adults like James, so they can continue to reach their full potential well into adulthood.