Preventing deaths from wandering, accidental drowning of children with autism spectrum disorders

Wandering-related factors such as drowning and external exposure are leading causes of death of children and adults with autism, according to studies and reports.

Jim Moody of the National Autism Association called for more awareness and prevention of wandering at last month’s Interagency Autism Coordinating Committee meeting in Washington, D.C.

Wandering is most closely associated with Alzheimer’s disease but it is also a major problem in people with autism, who often have compromised communication abilities, impulsive behaviors, and a lack of a sense of danger.

In 2008, Danish researchers found that the mortality rate among people with autism was twice that of the general population. In 2001, a California study found that drowning that often occurred after wandering led to increased death rates among those with autism.

Moody called for research on mortality data of people with autism, funding for safety devices and law enforcement training, and an expansion of the federal AMBER Alert system to include children with disabilities or life-threatening medical conditions.

“Our children and adults with autism are dying unimaginable deaths, many times without even a voice to call for help. They die alone, and they die terrified,” Moody told the IACC.

“Their loved ones are faced with having a child still missing after the sun goes down. Because of a lack of research, preventative measures, mass awareness, resources and emergency interventions are grossly lacking.”

Wandering incidents of children and adults with autism

Several wandering incidents in recent years have led to injuries or deaths and have highlighted the need for parents, caregivers, and authorities to take precautions to minimize the risk of wandering.

Last month, two young children with autism drowned after wandering. Aiden Johnson, 3, drowned in a creek in Carroll County, Arkansas. Christian Dejons, a six-year-old boy with a history of wandering, was found dead in a pond near his home in Atlanta.

Last December, 7-year-old autistic boy James Delorey went missing after wandering into the woods near his home in Nova Scotia, Canada. He was found two days later after a snowstorm and died after being brought to a hospital. Read the story and see the video. 

In November of last year, 10-year-old Bernard Latimore drowned in a neighbor's swimming pool after being reported missing from his home in Ocala, Florida. Latimore had autism.

Last October, Devine Farrier, an 11-year-old boy with autism who wandered from his home, died after being hit by a truck outside Seattle, Washington.

Ryan Barrett was a 14-year-old boy with autism on an annual camping trip in August 2009 in the Catskills when he was found drowned in a creek after having a seizure. His father David Barrett said, “He was there one minute and gone the next.”

In October 2007, 18-year-old Jacob Allen, who is nonverbal and severely autistic, was rescued after going four days without food or water after wandering away from his parents during a hike in West Virginia.

Guidance for parents and caretakers

Autism advocacy organizations Unlocking Autism and the NAA have teamed to provide guidance in the form of a safety toolkit and an Autism & Wandering Prevention Brochure. According to the NAA, 92 percent of parents surveyed said their autistic child was at risk of wandering.

Some of the recommendations include:

1. Develop an informational handout about your child. Circulate it to family, friends, and neighbors.
2. Teach your child to swim.
3. Get an ID Bracelet for your child.
4. Consider a personal tracking device.
5. Secure your home.

“These children are not wandering because of neglect or bad parenting, they are wandering because they have a medical condition,” said Moody. “With one in 110 children now diagnosed with autism, the potential for more tragedies is tremendous.”

See a video about the rescue of 18-year-old Jacob Allen, a teenager with autism who was missing for four days after wandering off a hiking trail in West Virginia.