Aug. 16, 2016 | So many great things are happening with autism research, outreach and community engagement that it’s hard to fit it all into one event.
“We would need twice, thrice the size of this room if we included everything that we are doing in autism research,” said Maya Lopez, M.D., UAMS associate professor and Arkansas Autism Treatment Network principal investigator.
Lopez was referring to the research posters lining the walls of Chairman’s Hall at Arkansas Children’s Hospital, which hosted the Aug. 9 town hall event, a partnership between UAMS, the Arkansas Autism Treatment Network, Autism Speaks and Arkansas Children’s Hospital.
In addition to mingling with researchers, participants heard from speakers about the Arkansas Autism Treatment Network, two autism programs called CoBALT and ECHO, and family care navigators. Together they kicked off the 2016 Arkansas Autism Speaks Walk and were entertained by performances from the Cheer City United Kronos Team, featuring special needs cheerleaders.
Ed Buckner, chief meteorologist with KTHV Channel 11 and parent to a daughter on the autism spectrum, emceed the event and said that Arkansas is lucky to have an Autism Treatment Network site in Arkansas. The grant was received by Arkansas Children’s Research Institute and the clinic is held at the UAMS James L. Dennis Developmental Center. It is one of only 14 such sites in North America. ATN sites have the collaborative goal of sharing research and improving outcomes for autism patients and their families.
“Through Autism Speaks and ATN, we continue to make a big difference in treatment outcomes for children with autism and on the autism spectrum,” Buckner said.
Buckner admired the audience of clinical professionals, families and community members.
“There’s a great support network out there now that wasn’t always there 30-40 years ago,” Buckner said.
Jayne Bellando, Ph.D., associate professor of pediatrics at UAMS and ATN lead behavioral scientist, said that great strides have been made, but there is still work to be done.
“We are all in this together,” Bellando said, explaining one ongoing Dennis Development Center project and introducing speakers to talk about two others.
With the CoBALT project – Community-Based Autism Liaison and Treatment – the team at the Dennis Development Center has partnered with 11 physicians and speech pathologist teams throughout the state to train them to be the first line of defense in flagging patients for autism services or redirecting others to get assistance with different diagnoses – all without the family having to come to Little Rock. They are hoping to get even more teams trained to provide better access to services across the state.
Similarly, the Extension for Community Health Outcomes (ECHO) project is all about expanding access to services in rural areas, with the focus on information sharing among physicians. Funded by a grant from Autism Speaks, the physicians will discuss autism topics via web-based platforms weekly or biweekly. Arkansans drive an average of 40 miles to see a doctor, Lopez said.
“It moves knowledge, not people. Patients don’t need to travel so far to see a doctor,” said Lopez, who is taking recommendations for doctors and advanced practice nurses to participate.
While CoBALT and ECHO focus on helping families get a diagnosis, the family care navigators who are part of the Autism Treatment Network are intended to help parents post-diagnosis. At the
Arkansas Autism Treatment Network program, parents Angeletta Giles and Teresa Dannaway play that role, whereas other programs typically employ social workers or other professionals.
“I think there’s a benefit there in that we actually know what it’s like,” Giles said. “It’s not just a job for us; it’s our life.”
“We want to pay it forward because we know what it’s like to feel lost when you first get the diagnosis,” Dannaway said.
Echoing the concept of “We’re all in this together,” Richard Jacobs, M.D., chairman of the Department of Pediatrics at UAMS and pediatrician-in-chief at Arkansas Children’s Hospital, shifted the spotlight to fundraising for autism research.
“You know who the heroes are to me? It’s the people who fight this battle every day to find the funds to fund the research to help these children,” Jacobs said.
Dawn Itzkowitz, Arkansas Autism Speaks Walk chairwoman, kicked off the 2016 walk with the help of the crowd.
“It’s an amazing event,” Itzkowitz said. “It is a day when we celebrate our families and our loved ones.”
The Autism Speaks Walk is the world’s largest awareness and fundraising event for autism. The Arkansas event is at 10:30 a.m. Oct. 1 at the Clinton Presidential Center. The 2016 goal is to raise $115,500 to support research and treatment programs. More information is available at AutismSpeaksWalk.org.