New support group at WVU aims to help parents awaiting autism evaluation, services • West Virginia Watch

West Virginia parents may face long waiting periods to get their child services for autism, or even to see a provider for an evaluation. A new support and education group at West Virginia University aims to help them in the meantime. 

The WVU Center for Excellence in Disabilities is starting Mind the Gap in August. The group will be facilitated by Dr. Amy Kurowski-Burt, an occupational therapist and Heather Merritt, the center’s positive behavior support curriculum developer. 

Burt said the idea for the program came about working with families at the center, noticing that parents can wait sometimes two to three years for an autism diagnosis or to get services for autism. 

“Research tells us that early intervention is the most effective for really any pediatric diagnosis,” Kurowski-Burt said. “The sooner you get to it the better they will be long-term through teenage years and adulthood.”

The group will focus on supporting and teaching parents what they can do for their children while they’re waiting for evaluations and services like therapy or an individualized education plan for school, Kurowski-Burt said. 

“It’s not just the therapist, it’s people who are with them all the time that can make the difference,” she said. “So that’s the parents, the siblings, the grandparents, the neighbors. So what information can we give them to help their child be the best they can be.”

Merritt and Kurowski-Burt did a survey and got more than 150 responses from parents about what topics they’re interested in learning about through the group.

“Across all age groups, we found parents all want the same type of information, and need the same type of support,” Merritt said. “And so, we took that coupled with the nationwide Mind the Gap curriculum and kind of just developed the plan to support families the best that we can here.”

According to the Centers for Disease Control and Prevention, an average of one in every 36 children has been identified with autism spectrum disorder. The disorder is characterized by ongoing social problems including difficulty communicating with others and repetitive behaviors as well as limited interests or activities. Symptoms typically are recognized by the time the child is two. 

Due to a nationwide shortage of providers such as psychologists, psychiatrists and developmental pediatricians, parents can wait two or three years just to have their child evaluated for autism, Burt said.

Many parents are interested in learning what autism is and what it means for their child, along with how to get the child ready for school and what behaviors to expect.

“I’ve run a similar group like this in the past at a previous agency I was at, and I have found that the support alone, parent to parent or caregiver to caregiver is so valuable, because what may work at somebody’s house, somebody else might not know,” Merritt said. “And so when they share those ideas it carries on within the community, and so they can lean on each other not only for support, but also with ideas of how to help their child. 

Kurowski-Burt said she’s excited to support families who are falling into a “gap” for services and to empower people with disabilities not to wait for a provider. 

“If we give these families strategies of things that they can do in their home or community that’s going to make a difference,” she said. “It doesn’t necessarily have to be someone who’s specialized – they can do stuff too. Providers also are awesome, but families don’t have to wait for someone to tell them what to do.”

Mind the Gap will meet from 6 to 7:30 p.m. each first Wednesday of the month beginning in August. Participants can attend in person at the center in Morgantown or virtually. 

The support and education group is free to attend, but registration is required. To register, visit https://cedwvu.wufoo.com/forms/mind-the-gap-parent-education-and-support-group/