Noah and Nate’s Journey with Autism

Erik and LukeOn Noah’s birthday, his family whisper-sings the “Happy Birthday” song. To celebrate one of his accomplishments, they applaud with their fingertips. And when Noah bows his head for a kiss on his forehead, his parents, Donna and Joe, know he’s showing love in his own way. Noah has autism, and these are just a few of the ways his parents have learned — with help from Children’s Hospital of Philadelphia (CHOP) — to interact with their son in a way that is comfortable for him.

“I’m so grateful for the people in Developmental Behavioral Pediatrics,” says Donna, who ultimately came to work at CHOP as a result of the care her boys received. “They’ve helped us find our way.”

Noah was 9 months old when his pediatrician connected the dots between his extreme agitation in enclosed places, such as an exam room, and his lack of interest in solid food. Noah was referred to CHOP, where Amanda Bennett, MD, MPH, a developmental pediatrician and Clinical Chair of the Autism Integrated Care Program, ultimately made a diagnosis of autism spectrum disorder.

Noah’s diagnosis opened a world of resources and support in the family’s home state of New Jersey. Thanks to Early Intervention, a state-funded program that provides services and supports for children diagnosed with autism, Noah walked at 15 months and spoke at 2. At CHOP, Noah also received coordinated care through the Autism Integrated Care Program, which has included developmental pediatrics, GI care, speech therapy, eating therapy, occupational therapy (OT) and sleep support.

‘A whole new ballgame’

Donna was 6 months pregnant with Nathan (“Nate”) when Noah was diagnosed. Unlike Noah, who is shy and avoids loud noises and touch, Nate was loud and outgoing. However, when Nate began to show some of the same “stimming” (self-stimulating) behaviors, such as humming and squealing and banging his chest and face, his parents knew he needed to be evaluated for autism.

Nate was 3 when he was diagnosed with autism. According to Donna, this later diagnosis made it more challenging for Nate to accept and participate in therapeutic intervention. Nate struggled with anger and violent tantrums. “His needs were different,” says Donna. “It was a whole new ballgame.”

Like Noah, Nate received occupational therapy and speech therapy, and also received physical therapy at CHOP to treat his walking gate. Nate also receives cognitive behavioral therapy to address his anger and tantrums. “Our priority for Nate was that he learn to cope with anger and frustration in a way his body was comfortable with,” says Donna.

Resources, education and commitment

Now 10 and 12, both boys have come a long way. Noah continues to receive OT and behavioral therapy at home. He has an IEP (Individualized Education Program) at school, which allows him to be in an inclusion classroom with a behavioral aide. He’s even made friends, which Donna says she never thought would be possible.

Nate is in a mainstream classroom with a shared aide. With the help of CHOP, his school and community therapy, he has far fewer tantrums and is learning more coping skills. Both boys love transportation and even have their own YouTube channels about trains. Although they seldom interacted as young children, they are now best friends.

“We’ve come so far,” says Donna, reflecting on the early days navigating her boys’ diagnoses. “I remember the hard, scary place, but I’m not in crisis now. Without the resources available, the education we’ve received and a lot of hard work, we’d never be where we are now.”

Both Donna and Joe participated in CHOP’s Center for Autism Research Next Step workshops for parents of children with autism. Now, they serve as parent experts at these workshops. “I love helping parents realize that this doesn’t have to be so scary,” says Donna. “It can be challenging but can also be beautiful. It gets better.”