Oct. 8, 2012 -- Like many parents with an autistic child, Lori McIlwain worries that her 12-year-old son, Connor, will wander away from school, home, or other safe places.
It has happened more than once.
When he was 7, Connor left his school’s playground unnoticed and walked toward a busy four-lane highway because of his fascination with highway signs.
“A man picked him up before he got there, but Connor couldn’t tell him who he was so they just drove around,” McIlwain says.
The man ended up taking him to another school where the police were called. But since Connor’s school had not alerted the police when they discovered he was missing, they did not know where he belonged either.
By the time McIlwain finally got to her son, he was hysterical.
Traffic Injury, Drowning Major Concern
Although the experience was terrifying for Connor and his parents, McIlwain knows they were lucky.
Bolting or wandering off is thought to be a leading cause of death among autistic children, and a new study illustrates just how common the problem is.
In the survey of parents of 1,218 children who have autism spectrum disorders, half reported that their child had wandered off or attempted to wander off at least once after the age of 4.
Many of these reported incidents of missing children involved close calls that could have ended in death, mostly from drowning (24%) or traffic injury (65%).
Children most often wandered off from home (74%), stores (40%), and schools (29%).
The study was published online today, and it will appear in the November issue of the journal Pediatrics.
“This is a huge issue for these families,” says researcher Paul Law, MD, who directs the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore. “Many parents say this is one of the most significant problems they face, and they go to enormous lengths and expense to try and keep their children safe.”
3 Deaths in 3 Weeks
It is not clear how many autistic children die each year after wandering away from safe places, but Lori McIlwain believes the number is increasing.
McIlwain, who is co-founder of the parent advocacy group National Autism Association, has been tracking media reports of wandering-related deaths among autistic children since 2009.
She has identified 22 cases this year alone, including:
- A 12-year-old boy struck and killed by a car on a busy interstate just days ago, after he wandered away from his Houston home at night.
- A 4-year-old boy who drowned in a nearby quarry after wandering away from his Franklin, Ohio, home in late September.
- A 3-year-old boy whose body was found in a lake near his Smith County, Texas, home in mid-September, a day after he was reported missing.
McIlwain says 9 out of 10 wandering-related deaths she has identified are drownings.
“It is common for kids with autism to be drawn toward the water, so drowning is a huge concern,” she says.
Wandering Now an Autism Diagnosis
McIlwain was instrumental in getting recognition for wandering as an official diagnosis last year.
She says the goal was to raise awareness that wandering poses a significant risk for many children and adults with autism, Alzheimer’s, and other disorders.
“The idea is to educate caregivers about what steps to take when a child goes missing,” she says.
This includes calling 911 immediately -- which was not done when her son wandered away from his school -- and searching places that might be of particular interest to the child.
Law says the description "wandering" is actually misleading for many kids with autism spectrum disorders.
“Technically, most kids with autism don’t wander,” he says. “They are often trying to get to something or get away from something.”
Behavioral Intervention Can Stop Wandering
Law says behavioral intervention, delivered by a trained specialist, can literally be a lifesaver for kids with autism spectrum disorders who wander.
“When we understand why a child is wandering we can often change the behavior,” he says. “If a child is obsessed with trains, for example, he might try to get to train tracks. Giving him videos of trains to watch at night may stop him from doing this.”
Geraldine Dawson, PhD, is the chief science officer for the group Autism Speaks. She says first responders such as police and firemen need to be educated about wandering and the importance of working closely with parents to develop a search plan that takes the child’s specific interests and behaviors into account.
She says that mobile tracking devices are a good option for some children and should be provided free of charge to families who need them.
Other tips for keeping children with autism safe can be found on the Autism Speaks web site.