Recently, approximately 18 Virginia family members of individuals with Autism Spectrum Disorder participated in a pilot training and educational program designed to assist families with behavior support and community inclusion for their loved ones.
The five-month, individualized training was provided by Virginia Commonwealth University Rehabilitation Research and Training Center and funded by the VCU Breakthroughs Fund.
Lauren Avellone, a research associate with VCU-RRTC, was one of the leaders of the project. She explained why this pilot training was conducted.
“We decided to do this, because there's a lot of support for children with Autism in schools and there's also a lot of support if you want to pay for in-home therapy services. But if you want to be out in the community, engaging in the community, there's not a lot of help for that. So that's why we decided exclusively to focus on community engagement.”
Family members received a walk-through workbook that included individual, personalized training with VCU-RRTC’s board-certified behavior analysts. Avellone discussed the focus of the training.
“The main focus is to work with parents to establish a community goal,” she said. “And that can be anything that's personally meaningful to them that's outside the home. That could be going to a doctor's appointment. It could be having their child come with them to the grocery store. It could be having their child attend a playdate with a friend or a peer or attend a sibling’s sports game. It's anything that the family finds personally meaningful.”
Parents and family members met frequently with their coaches to discuss the workbook training and to work through any issues that they might have experienced. This individualized approach was something Avellone said is valuable in helping families.
“What I think is most valuable about the model is that the coaching process is so individualized. Not only do the parents get to focus on a specific goal that they feel will enhance their life, but they can talk through it in real-time and troubleshoot with a person who is knowledgeable about how to flexibly implement that goal and think about how they might attack future problems once they leave the training.”
Whitney Ham, a training and technical assistance associate at VCU-RRTC, was one of the coaches of the pilot program and described her experience working with families during the training.
“One thing that struck me from the beginning was how open the families were willing to be and their willingness to let me into their lives and share their experiences parenting their children with me,” she explained. “I was able to learn of the challenges and the joy that comes with parenting children on the spectrum. We often spent our time discussing these situations, identifying what their priority for support would be based on their family values and time, and developing a support or intervention that felt right to them and made sense to their child. I have jumped for joy along with parents when they reach out to me and share something that went well or something they were able to do for the first time as a result of trying out a support that we planned together.”
Avellone explained the importance of creating a practical training program for families, and she highlighted some of the feedback the pilot program received as VCU-RRTC works to continue these types of training models in the future.
“We wanted to build an effective model that parents find useful and also feasible,” Avellone explained. “Parents, particularly parents of kids who have some additional needs, are often short on time and so this is an added task to their already very busy schedule. We've gotten a lot of feedback from people who say that even though they've heard a lot of the training material before, they've never made the connection between what it is and how it can help them. And they're seeing those links now.”
VCU-RRTC is looking forward to continuing this project in the future as new funding becomes available.