Families that suspect their child may have autism often find themselves waiting months or even more than a year before they can get a diagnosis. Wait times to receive a diagnosis are often worse for rural families, as there are fewer specialists and they can be hours away.
And, with autism, time is of the essence: The sooner children and families can be supported, the better the outcome.
Fortunately, an innovative telemedicine approach is coming to the rescue that bridges the critical gap for families prior to receiving intervention services.
Investigating a better way
With support from CTSI, Jessica Simacek, PhD, and Adele Dimian, PhD, developed and piloted a telehealth intervention to more effectively help these families.
“We provide virtual coaching and online modules to help parents and caregivers best support their child while they wait for an in-person appointment with a specialist,” says Dr. Simacek, Director of the Institute on Community Integration-led TeleOutreach Center with the Masonic Institute for the Developing Brain at the University of Minnesota and Principal Investigator on the study. “Our goal is to eliminate wait times.”
Since 2019, the Bridging Barriers project has been receiving funding, expert guidance, and project management support from CTSI’s Office of Discovery and Translation (ODAT). ODAT tailored its support to the needs of the research team’s innovation, with a focus on addressing potential development barriers and forging a pathway to impact.
“Now, we’re working to bring our telemedicine approach into practice so it can help more families more quickly,” says Dr. Simacek. “The funding and expert guidance we’ve received through our CTSI award has helped us make the leap from idea to impact.”
For example, more recently, CTSI’s ODAT team has been connecting them with other CTSA sites that might be interested in being part of a multi-site implementation pilot to demonstrate scalability.
Faster diagnoses, faster interventions
In just a few weeks, families who participated in the Bridging Barriers study received a diagnosis for their child and started receiving support. And when families can intervene months faster than they otherwise could have, they’re giving their child the best chance at success.
This was the case for study participants Jessica and Andrew, who wondered if their son Elias might be autistic. Their experience was captured in a University of Minnesota story:
In just four weeks, they had that critical diagnosis. Even better, they’re getting coaching on how to help their four-year-old son while they climb the wait list.
“Time is neurons,” says Jessica with an ever-watchful eye on her playful boy. “We can’t put our son’s developing brain on pause.”
Agrees Dr. Amy Esler, the study’s lead psychologist: “The brain, at this stage, is so malleable. Making sure kids learn to talk, for example, is much easier when they’re two or three than when they’re ten or 11.”
The story notes that, “with the help of the study’s early intervention, [Jessica and Andrew] are confident that they’re doing everything they can for him."
Jakub Tolar, MD, PhD, Dean of Medical School and Vice President for Clinical Affairs shared this sentiment in an accompanying video, saying, “The bridging of this kind, getting to the family soon is healing in itself.”
Reaching rural areas
Faster access and intervention isn’t the only perk. The story adds that telemedicine also has the potential to address a provider shortage, expand access to rural areas, and provide more effective care:
The number of people diagnosed with autism grows. But, for various reasons, the number of providers does not.
Telemedicine not only promises to serve more patients, more easily but, at least in one sense, also more effectively.
Video calls invite care professionals into the home where they can see their patients in a more natural – and telling – environment.
Says Dr. Adele Dimian, one of the study’s co-principal investigators and coaches: “What makes my day is seeing a family having fun together reaching a goal.”