‘His death will not have been in vain’ – support builds for ‘Avonte’s law’

In the weeks and months after he went missing, Avonte Oquendo’s name became increasingly well-known to New York commuters. The 14-year-old autistic teen’s disappearance led to one of the largest search campaigns in the recent history of the city. Subway conductors repeatedly reminded commuters of his details, and volunteers plastered fliers with a photo of his face all over the city.

Eventually, his remains were found in the East River in Queens, not far from his school, where a guard let him leave the building unsupervised. The teen had either run away or simply wandered off — behavior that nearly half of all autistic children engage in.

Sen. Charles Schumer, D-N.Y., intends to do something about the circumstances that led to Avonte’s death. Schumer announced Sunday that he will introduce legislation, “Avonte’s law,” that would create a program to provide voluntary tracking devices for families with children who have autism spectrum disorder (ASD) or other developmental issues in which bolting from caregivers is common, according to a statement.

“The tragic end to the search for Avonte Oquendo clearly demonstrates that we need to do more to protect children with autism who are at risk of running away,” Schumer said.  

“Thousands of families face the awful reality each and every day that their child with autism may run away. Making voluntary tracking devices available will help put parents at ease and, most importantly, help prevent future tragedies like Avonte’s.”

Schumer proposes expanding the federal program that’s currently in place for at-risk Alzheimer’s patients.

“We are proposing to set aside $10 million to get this program up and running,” a Schumer representative told Al Jazeera. “It will be up to local law-enforcement agencies to apply to get funding in order to bring these tracking devices to their communities.”

Fred Volkmar, chief of child psychiatry at Yale University and editor-in-chief of the Journal of Autism and Developmental Disorders, told Al Jazeera that existing programs that alert caregivers if a person with Alzheimer’s wanders off could benefit autistic children. But he also warned that “kids are more impulsive and faster,” so “there’s an increased safety risk.”

He said the proposed legislation could help address a “fairly common” problem. A recent report from the Autism Wandering Awareness Alerts Response and Education Collaboration, a group of nonprofits working against autism-related wandering incidents and deaths, found that 49 percent of children with autism attempted to wander off or bolt from caregivers.

“It’s much bigger than we thought years ago,” he said. “One of their leading causes of death are injuries, often things like drownings.”

Volkmar also pointed to other solutions, like wearing a bracelet that carries the child’s name, phone number and emergency contact details. The bracelet can also state that the child has autism.

Tracking devices and bracelets are great tools, he said, “as long as they stay on the kid.” Often children with autism have unusual sensitivities. “They don’t like to wear things. That’s a hurdle to get through. They have sensory issues. That’s part of the challenge.”

It has led to some parents looking at other methods to keep children with autism safe if they try to wander off, such as temporary tattoos with contact information and helper dogs.

But none of these things would be as necessary, Volkmar suggested, if security officers and other supervisors were better informed about autism and knew about the risk of wandering.

David Perecman, a lawyer for the Oquendo family, said the law would make sure Avonte’s death does not go unnoticed.

“There is no medicine to relieve the pain from the loss of a child,” he said. “However, Avonte’s law will make sure that this grave loss and the pain it has wrought will not be vain.”

But Perecman also indicated that the problem behind Avonte’s disappearance is complex and, like Volkmar, called attention to the necessity of training security personnel to properly deal with special-needs individuals and putting adequate processes in place after a student goes missing. An hour after Avonte took off, the school still thought he was inside the building, WYNC reported. 

Critics have pointed to perceived shortcomings in a new policy that mainstreams special-needs pupils without providing sufficient funding for training security personnel about the particulars of autism. The guard who asked Avonte where he was going before he left school that day didn’t know the teenager was nonverbal. She thought he was one of the “normal” kids, according to WNYC.

“School safety officers do not have any knowledge of whether a student has an IEP (individualized education plan),” Johanna Miller, advocacy director at the New York Civil Liberties Union, told Al Jazeera in November.

“We don’t advocate that the Department of Education shares these records with the cops, but there’s a gap in how the adults in the building can protect students with special education needs.”

Wilson Dizard contributed reporting.