Program Supports Parents and Caregivers of Young Children With Autism Spectrum Disorder

The high care demands of parenting a child or children with autism spectrum disorder (ASD) can be an isolating and stressful experience for parents and caregivers. Many report challenges associated with finding family-centered support and resources.

"Often, families find us shortly after receiving a diagnosis for their child. This can be a really difficult time," says Chiara Graver, Supervisor for Outpatient Services at Cleveland Clinic Children's Center for Autism.

Beyond the technical skills and related care that the Center for Autism provides, she found that families were seeking something more, like community, connection and information.

"We wanted to leverage the insights of experienced families who are interested in assisting and guiding other families outside of the therapies we provide clinically, " Graver says, noting that a friendly face who understands what you're going through can be powerful. She adds that caring for families is another way to care for the patient.

Now, with funding made possible by a Cleveland Clinic Catalyst Award, the Center for Autism is doing just that. The program Graver has proposed aims to reduce parent/caregiver stress, increase support networks and improve family well-being.

Dedicating time and space

The program will offer dedicated time and space for parents and caregivers of children with ASD to receive personalized support from trained clinicians within a network of families on a similar journey. It balances social and educational dimensions while also including childcare.

"Parents can mix and mingle and have dinner together with other adults while their kids are with our trained staff. We wanted to give parents that time for themselves and allow them to ask questions about relevant topics," she explains.

A group setting, where people feel supported and relaxed, is ideal for honest conversations and difficult questions. People piggyback off each other and may find they have similar lived experiences and concerns, Graver says.

She has led similar support programs at Cleveland Clinic Children's over the years, but this is the first time she has led such a program for the ASD patient population and their families. This concept pulls from her other experiences and is backed by research that shows the value of peer-to-peer learning in this setting.

The program will also offer the option for kids to join, with trained clinicians on-site to engage with them. "For most people, leaving the kids at home to attend support sessions is not an option. They are not only welcome but encouraged to join," she says.

A focus on parent satisfaction

Graver and colleagues will also collect attendance data and administer parent-reported outcome measures throughout the program. The metrics are not to track the child's progress but to evaluate whether parents feel it's a meaningful and network-building experience.

She is also consulting with families to get perspectives on useful content. "We want to be sure we are centering information that isn't just clinical in nature but reflective of family and patient needs."

She says demonstrating success after the program's pilot year will be necessary. Depending on their outcomes, the team will consider making it a regular offering for families of the Center for Autism.

"Our outcomes are rooted in parent satisfaction," she says, "At the end of the day, we want parents to feel like they have people they can reach out to if they are struggling or just have a connection with someone who has gone through something similar," Graver concludes.