When Jennifer James heard about a north Iowa autistic teen who went missing over the weekend, she couldn’t help but think of her own son Matthew, a 15-year-old with autism who has wandered off several times.
“That could have been us,” she said, adding once he fled five miles away on a tricycle. “We definitely could be in their shoes at any time wondering where he’s at.”
Wandering is a common challenge for caretakers of autistic children. A 2011 study found that nearly half of all children with autism attempt to elope from a safe environment — nearly four times the rate of their unaffected siblings. The behavior is often compared with that of Alzheimer’s patients who wander away from home or care facilities.
That means parents must remain vigilant, using special deadbolt locks, alarms or other wearable tracking device technology to dissuade their children from leaving.
“It’s a daily thing. It’s constantly on our minds,” said James, of the Corning area. “He could wander at any time.”
It’s unclear whether wandering played a role in the weekend disappearance of 16-year-old Jake Wilson in La Porte City. Police on Wednesday continued their search for the boy last seen at 9 p.m. Saturday going for a walk to Wolf Creek in town.
“Hopefully Jake shows up today,” La Porte City Police Chief Chris Brecher said. “We’ve just got to remain hopeful.”
Kris Steinmetz, executive director of the Autism Society of Iowa, said children on the autism spectrum often lack any sense of fear or safety.
“It’s also very scary for the family,” she said. “Often, they’re drawn toward moving water or ponds. That’s usually the first place a search will start.”
New law will be “very helpful” for future cases
The problem of wandering is so acute that Congress recently passed a new law to free up resources for locating missing people Alzheimer’s disease and autism spectrum disorders.
Kevin and Avonte’s Law, which was co-sponsored by Iowa’s senior senator Chuck Grassley, allows for U.S. Department of Justice grants to go toward state and local education and training programs that help prevent wandering and reunite caregivers with missing family members who have a condition linked to wandering.
The bill was named after 9-year-old Kevin Wills, who died in 2008 after jumping into the Raccoon River near his hometown of Jefferson, Iowa and Avonte Oquendo, a high school student who drowned in New York City’s East River in 2014.
“The feeling of dread and helplessness families must feel when a loved one with Alzheimer’s or autism goes missing is unimaginable,” Grassley said in November. “But when communities are empowered to lend a hand, these terrifying situations can have happy endings.”
President Donald Trump signed the bill into law on March 23.
While the grant process has not yet begun, Steinmetz said the law could have helped with the search for the missing boy in La Porte City.
“And I think will in the future because it provides a provision for law enforcement training,” she said. “So that will be very helpful.”
‘We never give up hope’
Missing children with autism are recovered at higher rates than children at large, according to data kept by the National Center for Missing & Exploited Children.
Between 2007 and 2017, the center recorded 952 cases of missing children with autism.
During that time, 48 percent of children with autism were recovered dead or alive within one day of their disappearance, while 14 percent of missing children at large were recovered within one day. Likewise, 74 percent of children with autism were recovered within one week, while only 42 percent of the total missing children population was recovered within a week.
“It seems like it’s happening more often or being reported more often,” said Alan Nanavaty, executive director of the Center’s Missing Children’s Division. “Almost 1,000 cases in ten years, that’s pretty significant.”
Missing children with autism present special challenges. Police must consider possible triggers like loud police sirens and must probe deeply about the child’s interests and attractions, whether they’re bodies of water or winding train tracks. And the autistic population can be particularly vulnerable to the weather by not comprehending the danger from harsh conditions.
Training of law enforcement varies, but Nanavaty says departments are becoming increasingly savvy about how to search for children with autism.
While time is of the essence in any search, Nanavaty, who formerly worked for the FBI, said parents should not hesitate to report a missing child, particularly one with special needs. Parents should not burn time looking on their own before getting police involved.
“You can never put too many resources to find that child up front. You can always put too few and then try to play catch up,” he said. “And you’re really never going to have success doing it that way.”
Nanavaty was encouraged by the show of support from the community in La Porte City. About 480 volunteers flocked to the small town Wednesday, bringing their horses, ATVs and UTVs.
“We never give up hope,” Nanavaty said. “We will always search and always support the search for a lost child.”
‘It just happens in a split second’
Iowa State Patrol Captain Mark Logsdon, who oversees the Iowa Capitol Police, said police need to be trained on the complexities of dealing with special populations, whether it’s Alzheimer’s patients or children with autism.
“Any kind of information you can get that deals with the population you might encounter is paramount,” he said. “It’s another tool in our toolbox.”
Logsdon has two 6-year-old twins with autism, so the story of the missing teen in La Porte City hit close to home.
“It really breaks my heart when I see a story like that,” he said. “You have a tendency to personalize incidents like this to think it could be your kid someday.”
Logsdon said he and his wife try to get their children out of the house, normalizing them to a variety of environments. They’ve never wandered far, but he’s remained hyper-vigilant, checking the doors and the gate constantly.
“I think it could happen at any time,” he said. “We’re very fortunate that we haven’t had to deal with that at this point. But you also have to be very aware.”
James, of the Corning area, said her family has a longstanding system of keeping watch over her autistic son, who is nonverbal. But even that system can fail.
“We try to have different things in place but when it happens you always realize the system breakdown of what didn’t work,” she said. “So you try to correct it so hopefully there’s not a next time.”
She wants people to know that parents like her are not neglectful. And parenting special needs children is different than parenting the typically abled.
“It’s not like we’re not watching them,” she said. “It just happens in a split second.”
Her Matthew wandered away twice — once getting as far as five miles away on his tricycle. Her local sheriff is aware of his condition and his tendencies, she said. But incidents like the one in north Iowa remind her of what could happen.
“I’m just imagining those parents.” she said. “I found Matthew both times, but they’re just wondering.”