Keeping autism wandering in check
In memory of 9-year-old Leo, free tracking devices are available to people with autism spectrum disorder
By Michelle Koidin Jaffee
Jaliyah Howard loves giving hugs and stepping across the balance beam at gymnastics. At 6 years old, the Gainesville girl is as curious as any child. But Jaliyah also has autism spectrum disorder, and communication is a real challenge.
Her parents worry about Jaliyah’s newfound ability to unlock doors. Many children with autism tend to wander. A couple of times, when her mom turned away for just a few minutes, Jaliyah disappeared in the house and, because she is primarily nonverbal, didn’t respond to being called.
“We are on constant alert all the time,” her mom, Jovon Howard, said.
Now, the Center for Autism and Related Disabilities at the University of Florida is launching a new state-funded pilot program to provide free, wristwatch-style tracking devices to residents of the Gainesville region who have autism spectrum disorder and are at risk for wandering. The program, also underway at Florida Atlantic University and the University of South Florida for the Palm Beach and Tampa areas, covers the cost of the devices for participants and receivers for local sheriff’s offices.
The devices are being made available through state grants — $100,000 to each of the three centers — as a result of Senate Bill 230, which the Legislature passed this year. The law is aimed at improving personal safety for people with autism spectrum disorder by providing tracking devices that aid in search-and-rescue efforts.
Known as Project Leo, the law was passed following the 2014 death of 9-year-old Leo Walker, a boy with autism spectrum disorder who wandered from his North Florida home and drowned in a nearby pond.
At the UF center, 80 personal transmitters — which can be attached to clothing or worn around the wrist or ankle — will be available and distributed to those who meet certain criteria, including risk of wandering and a diagnosis of autism spectrum disorder. Residents of Alachua, Columbia, Suwannee, Hamilton and Baker counties may apply; those interested should contact Ana Vilfort Garces at the Center for Autism and Related Disabilities at 352-273-0581 or firstname.lastname@example.org.
As soon as Jovon Howard heard of the new program, she quickly asked how to sign up. Her family had briefly tried a different tracking device for Jaliyah — a device that provided status updates to their smartphones — but it became too costly.
“It was a source of comfort, almost like a digital guardian,” Howard said. “We really, really need this for our daughter.”
In Alachua County alone, there are more than 1,000 children and adults who have autism spectrum disorder.
“Wandering is a problem for a good number of children with autism,” said Ann-Marie Orlando, Ph.D., a research assistant professor at UF’s Center for Autism and Related Disabilities.
The purpose of the new program is to help those who cannot afford to buy the devices, Orlando said. For those who can afford them, devices are sold online and can be connected to receivers already in use by many sheriff’s offices, including the Alachua County Sheriff’s Office.
“It can save lives,” Orlando said. “We want children and families to be protected.”
UF’s center is obtaining its transmitters from Project Lifesaver International, a Port St. Lucie-based nonprofit that sells electronics intended for people with cognitive disorders. According to Project Lifesaver, most people who wander are found within a few miles of home, and the use of tracking devices has cut search times from hours or days to minutes.
The three Florida centers participating in the pilot project will report back to the governor and Legislature with results and recommendations by December 2017.
“We hope it will be expanded to all counties in Florida,” said Greg Valcante, director of UF’s Center for Autism & Related Disabilities.