When the Pieces Start to Fit: Transforming Care for Children with Autism

It didn’t take long for Chrissy Kelly, a mother of two boys with autism, to realize her son’s stay at Valley Children’s would be different.

Parker, who has autism spectrum disorder (ASD), the fastest-growing developmental disability in America, was getting treated for appendicitis in 2017. Bracing for a difficult visit, Chrissy was surprised and encouraged almost immediately. The Hospital’s intake form lists steps to personalize a visit for a child with autism.

“When I looked at the intake form, I realized that this was by someone who knows what they are doing and has done this before,” she said.

The next reassuring sign? A sign. Approaching Parker’s room, Chrissy spotted a giraffe-like jigsaw puzzle placard signifying George’s Pass hanging at the door.

George’s Pass is a unique series of initiatives targeting the 300 children with autism who come through the Hospital’s doors annually. It was developed by Valley Children’s nurse Shelly Reyes, who combined a mother’s knowledge with a nurse’s perspective and education. The program was for children like her son, Jalen, who is frightened by hospital experiences.

“As a mom of a child with autism, I want to help other families like mine,” Shelly said. “This program has allowed me to share my experience and show the people I work with how to provide better care for children like my son.”

All staff participates

To alert staff to a child with ASD, the George’s Pass placard is hung from the patient’s chart and door. Parents fill out the intake form providing information about their child’s communication, behavior triggers and sensory issues.

For a planned hospital visit, a private tour and “social story” prepare the child using pictures of events the child will encounter, such as the “arm hug” of a blood pressure cuff. For unplanned visits, staff work with the family to try to improve their experience by changing the environment and interactions.

Parker was walked through the process with an illustrated book displaying all the steps in his treatment.

To reduce a child’s stress, staff offers distraction toys and iPads with games and communication apps.

George’s Pass goes beyond doctors and nurses. It engages employees from security officers to janitors to play a role in improving the child’s experience. It may be as simple as keeping noise down. Hospital leadership supported the program by forming a team to build George’s Pass throughout the organization.

Word is spreading

Since Parker’s hospitalization, Chrissy has advocated for George’s Pass on her blog. She was interviewed by an online publication about the program. Her blog was featured by the Autism Speaks website and viewed around the world.

George’s Pass is gaining international attention as other hospitals and organizations consider incorporating its elements into daily routines.

“It’s not enough for a hospital to make your child better but to say ‘we are going to understand your child as we make him better,’ ” Chrissy said. “Valley Children’s acknowledges that these small differences can make a huge impact.”