Parents of Autistic Kids Look to Tracking Devices

Hana Schaul, 5, at the Emerge and See Education Center in Chelsea.

Hana Schaul, 5, at the Emerge and See Education Center for autistic children in Chelsea.

Last October, Ken Siri had been on a bike ride in Central Park when his son’s caregiver called to tell him that his 15-year-old autistic son had disappeared. At first, his father wasn’t too concerned.

Alex had left the Upper East Side apartment they shared before. In the past, he had managed to get away unnoticed before when his father was in the shower, but usually the building’s doorman would stop him before he left the building.

Usually Alex isn’t hard to find, he tends to make a lot of noise, often clapping his hands as he walks.This time, the doorman hadn’t seen or heard Alex walk out. After he had been missing for over an hour, his father started to get worried.

This was the same month that 14-year-old Avonte Oquendo, bolted from his Long Island City high school, leading to one of the broadest missing persons searches in New York City history.

Alex is non-verbal, just as Avonte was, further stacking the odds against him that he would find a safe way home.

After another hour of searching in an adjacent building and around the neighborhood, his son strolled in with an escort of eight police officers and a woman who lived nearby. She had seen him wandering, recognized him from the neighborhood, and made him a sandwich while she called the police, said Alex’s father.

While Siri’s son suffered no ill effects from his two-hour absence, Siri said the experience made him realize the need to find better ways to keep his son safe. Part of that plan is to find a tracking device that his son can wear or keep with him at all times.

Siri is far from the only parent of an autistic child looking for help from technology. The discovery last month of the remains of Avonte on the banks of the East River was a tragic reminder of the dangers facing non-verbal autistic children and teens that manage to escape their caregivers.

Three months after Avonte’s disappearance, Sen. Charles Schumer (D-NY), proposed Avonte’s Law on Jan. 26, if passed, it would provide $10 million in federal funding to police stations, so they could provide tracking devices to parents of autistic children, free of charge.

Taking the effort a step further, U.S. Attorney General Eric Holder announced last week that he would not wait for Avonte’s Law to pass. He said he would make Department of Justice grant funding immediately available for police departments interested in purchasing the devices.

Parents like Siri and autism advocates lauded the effort to expand access to tracking devices.

“It can be a very critical way to track kids who are non-verbal or have limited verbal capacity,” said Kim Mack Rosenberg, a spokesperson for the National Autism Association. “I know many families personally who could really benefit from these devices.” She added that about half of autistic children exhibit bolting behavior.

Hana Schaul, 5, draws a picture at Emerge and See Education Center for children with autism.  Hana's mother, Lynn Schaul, 46, says she has considered getting a tracking device for her daughter.

Hana Schaul, 5, draws a picture at Emerge and See Education Center for children with autism. Hana’s mother, Lynn Schaul, 46, says she has considered getting a tracking device for her daughter.

Lynn Schaul, 46, considered getting a tracking device for her five-year-old daughter Hana, but she she said she was worried about whether her daughter would be able to tolerate wearing it. Many children with autism have sensory issues that could make wearing something like a tracking bracelet or anklet uncomfortable, according to Amanda Friedman, co-director of Emerge and See Education Center for autistic children.

That’s why parents like Alex’s father, prefer alternative devices that can be clipped onto a belt, or kept in a pocket. Siri has thought about re-purposing a micro-chipped Nike shoe used by marathoners to track their progress in the race, as way of tracking his son. He’s also thought about using a tracking device in the iPad his son uses to communicate. The risk with these options is that these devices are easy to lose, or be discarded than a wristband or anklet worn most of the day.

Then there is the issue of design. Many tracking devices worn on the wrist and ankle are bulky or are unattractive, even though they are the most effective.

And a number of parents have also worry about the stigma of wearing a tracking device, and how their children might be viewed as a result, said the education center’s Friedman.

One parent, whose son has been wearing his tracking device for about a week, said he thought the white wristband looked like some kind of prison bracelet, she said.

A tracking device worn by a student at Emerge and See Education Center in Chelsea.

A tracking device worn by a student at Emerge and See Education Center in Chelsea.

Improving the appearance of the devices to make them look more like a regular bracelet or watch would make it easier to convince children to wear them, and make their true purpose less obvious, said Emerge and See staff members.

“If it’s something that she likes, if it was pretty enough,” Hana’s mother said, maybe she would wear it.

Hana’s mother, who just started taking her daughter to Emerge and See, is not sure that her daughter will need a tracking device when she is older since she has some verbal skills. But Schaul said having the device might help her sleep better at night, since she won’t be as worried about her daughter’s safety.

Schaul estimated that the cost of caring for her child topped six figures per year. Health insurance reimburses much of that cost, she said, but nothing is guaranteed.

“It’s a whole battle and you have to plan on not being reimbursed because that’s not realistic. It’s a mess,” she said.

GPS tracking devices alone range in cost from about $100 to $200 apiece. Because they use cellular towers and satellites to transmit signals, these devices also have a monthly service fee, which ranges from about $15 to $45 per month.

Tracking devices that use radio frequency  cost under $10 each. However, users can’t see the device’s exact location on a map like they can with GPS trackers.

Types of Tracking Devices GPS Radio Frequency
Pros With GPS technology, parents can see exactly where their child is located on a map. A feature called “geo-fencing” also allows parents to set a virtual perimeter. If the child crosses that perimeter, the parent will receive a text message to alert them. Radio frequency signals will transmit if the tracker is indoors, in dense forest, or underwater.
Cons GPS trackers don’t work indoors or anywhere a satellite or cellular tower signal could be disrupted. The device cannot tell you the exact location of the tracker. Instead, the transmitter will chirp louder as you get closer.
Cost Ranges between $100 and $300 depending on the plan users choose. There is also a monthly service fee of between $15-$45 per month. The device costs under $10, plus an addition few dollars for new batteries each month.
Examples EYEZ-ON Care Trak

Each police department will be able decide on which devices they would like to purchase and how much of the cost they will cover, according to Sen. Schumer’s spokesperson, Max Dworkin. It’s still unclear, however, whether police departments will reserve any funding to offset the cost of the monthly service fee.

Many families with autistic children are already financially strapped, parents use pensions and savings to pay for good schools for their children’s therapies and education, said Friedman. Adding the cost of a monthly tracking service may not be manageable for every family.

Using technology is not the only means of protecting children from bolting, say experts. The educational center’s Friedman recommends that parents introduce their autistic children to neighbors and area shop owners, so that if they ever saw their child wandering alone, they should call the parents or the police.

Figuring out what causes children and teens to bolt can also help. Depending on whether the child is acting out of fear and over-stimulation, or boredom could help prevent repeat incidents, she said.

Despite the unresolved issues, for parents of autistic kids, the new measures are a welcome sign that hopefully will prevent further tragedies.

Siri said the fact that politicians were focusing on the issue of safety for autistic children is important.

“It’s great that something get’s done,” said Siri. “It would be a nice legacy of Avonte.”