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In her brief life, Savannah Martin demonstrated that she learned more than doctors ever thought she would.
When Savannah was diagnosed with severe autism at 2, doctors told her mother, Beth Dilg, not to expect too much – that Savannah was never going to look at her, talk to her, hear her or ever say, “I love you.”
“That was hard,” Dilg said, a single mother who also has a toddler and a preteen at home. “And thankfully, I had amazing people in my life that said, ‘Don’t give up. Never give up. You fight, you work hard and you never give up on her.’”
Aside from intensive therapy, the nearly constant attention from Dilg helped her development.
“I did everything I could for her. I thought she was safe,” she said, “I was always with her.”
But Dilg and many other parents have learned the hard way that children with autism can wander off – instantly putting themselves in mortal danger.
Dilg's life changed on a sunny Sunday morning in February 2011 in Lawton, Oklahoma. Savannah, 7, was still in her church dress when Dilg put a bowl of instant noodles in the microwave. During the four minutes it took to heat up the noodles, Dilg went to the bathroom. As she flushed the toilet, she heard the front door close.
“I knew something was wrong,” she said. “Panic hit right then, and so I ran downstairs. She wasn’t by the microwave. I ran out the front door … I was screaming her name and screaming her name, and couldn’t find her anywhere.”
Savannah – and her 2-year-old brother Tommy, who doesn’t have a disability – didn’t respond. They’d gotten past a barbed-wire fence and into a pond less than 50 yards from their home.
Tommy wore a bicycle helmet that kept his head above water and kept him alive. Desperate to save her life, Dilg stooped over her daughter’s lifeless body, performing CPR until the EMTs arrived.
“They took over and I kept screaming, ‘You have to save her! You have to save her!’” said Dilg.
Savannah’s story was a classic case of what autism experts call eloping, wandering or bolting.
“They will wait for their chance to bolt away,” said Lori McIlwain, cofounder of the National Autism Association. “This is a fight-or-flight response. And the unpredictability of it is what makes it so very dangerous.”
McIlwain knows the risks of bolting firsthand. Her son, Connor, was only 7 when he bolted out of school.
“Kids with autism, they are fascinated with certain topics, and for him, it was highway signs,” she said. “So, he headed out on foot to the highway to find his favorite exit sign.”
A driver who saw Connor got him to safety, but the crisis lead McIlwain to track how common bolting is – and what might help save more children.
In 2012, researchers at the Kennedy Krieger Institute, along with the Interactive Autism Network, helped spearhead the nation’s largest online autism research initiative.
Their findings were staggering: 35 percent of respondents said their autistic children attempted to wander at least once a week. Another 29 percent said their children attempted to wander multiple times a day. Overall, half of all children on the autistic spectrum “bolt” around age 4 – up to eight times as often as their unaffected siblings – and they’re most often drawn to roadways or water.
A 2008 study by Danish researchers found that the mortality rate among people on the autism spectrum was about twice that of the general population.
In one of the most famous cases of bolting, 14-year-old Avonte Oquendo left school in Queens, New York, and was captured on security cameras. But searchers failed to track his path to the East River, where his body was found three months later. It was devastating news for his stepbrother, Daniel, who searched alongside hundreds of volunteers.
“Being in this area is very tough for me,” Oquendo said near where his brother's body was wound. “His family were out here tirelessly night and day for months and months, and to know that the ending result was so tragic, it hurts being around here.”
Lori McIlwain
National Autism Association
Avonte’s case became a rallying cry. McIlwain and other parents have begged lawmakers for small fixes: funds for tracking bracelets, swimming lessons and fences that they say could go a long way in saving lives.
“Children and adults who cannot speak, recognize danger, or understand ways to keep themselves safe are the most vulnerable people living in the country today,” McIlwain said last month at a Capitol Hill briefing on bolting in children and adults with autism, organized by Sen. Chuck Schumer, D-N.Y., and the National Autism Association.
McIlwain and other parents are hoping to pass Avonte’s Law, a bill introduced by Schumer that would authorize $50 million over five years to reduce “the risk of injury and death related to wandering, as well as safeguarding individuals with disabilities during interactions with law enforcement.”
A lack of information about bolting compounds the problem when it happens. Even after their children are diagnosed, half of parents say they weren’t warned about “bolting.” Kids who bolt aren’t eligible for the Amber Alerts used for abducted children or the Silver Alerts used for adults with Alzheimer’s. And police departments aren’t trained to search for them.
“Some kids might be afraid of canines or sirens or helicopters. It might end up hindering search efforts,” McIlwain said. “If a child’s scared of a dog and they hear a dog barking, they might hide from the searchers – not understanding that they’re lost, not understanding that somebody is trying to help them.”
Compounding the pain is the suspicion about the parents’ role when a child bolts.
“A lot of our parents are afraid to dial 911 for fear of being accused of neglect or being blamed if their child’s missing,” McIlwain said. “If they’re unaware, then that’s the first thing they’re going to go to – that the parent was neglectful.”
Days after her daughter died in her arms, Child Protective Services concluded it was Dilg’s fault that Savannah bolted and eventually died. Authorities said that her act of negligence was not taking her to the bathroom with her.
In the end, Dilg was cleared. But it’s a mental scar she still deals with, even after giving birth to another child a few months ago – who would have been Savannah’s little sister.
“I can’t help but thinking, ‘Where would she be now?’ She beat the odds. She talked to me. She told me that day that she loved me,” Dilg said. “She was capable of so much.”
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