In recent weeks, three children with autism have drowned after wandering away from a safe setting. I wish I could say this is uncommon. From 2009 to 2011, accidental drowning accounted for 91%1 of total U.S. deaths in children with autism ages 14 and younger subsequent to wandering/elopement, and these are only the ones we know of. Of those, 23% were in the care of someone other than a parent.
Each spring, NAA sees missing-person reports skyrocket in the autism community, and sadly, fatalities. Because our staff monitors these incidents closely, we often come across comments that ridicule, judge, even threaten caregivers over their “bad parenting.” Parents who are mourning the loss of a child are especially kicked and spat on.
Unfortunately, our society is grossly uneducated on this issue. This ignorance only serves to fuel a harmful perception that minimizes this community’s need for real resources and support, and offers additional heartache and sorrow to parents and siblings who have already suffered a significant loss.
Similar to wandering behaviors in seniors with dementia or Alzheimer’s, children and adults with autism are prone to wandering away from a safe environment. Research shows:
- Roughly half, or 49%, of children with a autism attempt to elope from a safe environment.2
- This rate is nearly four times higher than their unaffected siblings2, indicating this is not an issue of parent neglect or bad parenting.
- Since September 2011, more than 20% of missing children with autism left the care of a teacher, aide, counselor or bus driver.3
This is happening in all settings, not just the child’s home. Many incidents and deaths have occurred at schools, day camps, and daycare facilities where common supervision patterns are in place.
We’ve seen comments ranging from, “Throw that parent in jail!” to “Who lets a special needs child out of their sight??” There are also comments that blame both the child and the parent: “Your child is a burden on society.” These typically are in response to search efforts costing tax-payer money.
Following a news story this week about an 11-year-old boy with autism who drowned in a neighborhood pond, a commenter says: “I do feel for this mother, but please tell me why an 11 year old special needs child was allowed to walk out of the house without the knowledge of the mother? The parent is untimately (sic) responsible for ensuring the safety of their children.”
This is mild compared to most comments I’ve seen through the years. The commenter, however, appears to assume they have a complete understanding of the details related to this case. If they actually did know the details, they’d be kicking themselves right now.
After a drowning earlier this month, a commenter wrote, “I would NEVER take my eyes off of my child!!” We get a lot of these. Just typing that sentence qualifies as “eyes off” and for many of our caregivers, that would be all it took to lose a child, as would sleeping, bathing, cooking, using the toilet or tending to another child. Close adult supervision differs from around-the-clock contact, and it’s simply unrealistic for any human being to maintain complete focus on any one person or thing 24 hours a day.
It would interesting for these same commenters to see posts from the parents of elopers struggling with this issue everyday. Most of them are desperate for help, answers, resources, and support. Here are just a few of their comments:
“I love the warm weather, but wow, it makes my life difficult. When it’s warm my daughter just wants to GO, if I lose sight of her for 15 seconds I am in a panic, grabbing the phone in case I have to call 911! I HATE living that way, we lock doors and hide her shoes (she gets further quicker with shoes on!) and do everything we can to keep her safe, but she’s smart, fast and determined! I pray one day she will learn not to just walk off whenever she pleases (which unfortunately is nearly all the time).”
“In 2009, a study done by the University of Wisconsin-Madison found that mothers of children with autism showed physiological markers for chronic stress comparable to that of soldiers in combat. I have to admit when I read that in 2009, my initial reaction was, ‘That’s going a bit too far.’ …I have come to understand how one can compare my stress to that of a combat soldier. While MY life isn’t at risk, my DAUGHTER’S is every day. To keep her safe, I must be constantly vigilant, always on high alert, with eyes and ears on my kids at all times. It is unbelievably exhausting to have to be “on” all the time. Every autism parent knows the stories about other kids who have died after they wandered off. We have heard people say things afterward like, ‘I can’t believe those lousy parents let that happen.’ …Maybe today is the day my child will learn to disable a child lock, or unchain a door. We know the potential dangers. We take precautions, but we are only human. We can get distracted making dinner, or maybe we need to go to the bathroom. Sometimes our kids get very good at taking advantage when we are distracted. Some of them make hundreds of attempts at escape every day. If a child does go missing, or gets hurt, the very last thing the parents need is uninformed & judgmental comments. Believe me, if our nightmares become reality, it is already the worst day of our life.”
“Last week my county had its annual Special Olympics Spring Games. I went to support and cheer on my son… in Kindergarten. In my school district, each child is partnered with a High School student volunteer. After my son finished his games, he sat in under our school’s tent and had a snack. The High School Student was standing just outside the tent, talking with some of the other HS volunteers. I was talking with my son’s teacher. …After a few minutes of talking with him, I glance at the gaggle of children, looking for my son. He wasn’t there. Luckily, [he] was found within a minute or two of our search launching. …Sadly, I don’t know if the school personnel would have even noticed him gone before he had returned.”
Could you imagine having to hide your child’s shoes? How about sleeping next to their door, or the hotel-room door? I’ve known parents who have dedicated every waking (and sleeping) moment to keeping their child safe only for their worst fear to be realized.
According to research2, half of families with elopers reported they had NEVER received advice or guidance about elopement from a professional. The study also found:
- Wandering/elopement was ranked among the most stressful ASD behaviors by 58% of parents of elopers
- 62% percent of families with children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
- 40% of parents had suffered sleep disruption due to fear of elopement
UNDERSTANDING & SUPPORT
It’s important to understand that autism elopement is a medical condition, and that those with autism may take any opportunity to wander towards something of interest, or away from something (loud noises, bright lights), whenever and however possible.
Close adult supervision is critical and any child or adult with autism should be closely supervised at all times. Accompanying measures should also be in place to secure the home, classroom, or any setting and ensure the child’s safety while preventing opportunities to wander. If readers truly want to be a part of the solution, please offer support instead of harsh criticism. Help a parent grocery shop. Provide a teacher with tools for his/her classroom. If nothing else, lend a kind word.
The more we know and understand, the better we can help prevent these dangerous and tragic incidents affecting half of the 1 in 88 children now diagnosed with autism.
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1) Lethal Outcomes In Autism Spectrum Disorders (ASD) Wandering/Elopement; Lori McIlwain, Wendy Fournier – National Autism Association, January 20, 2012 http://nationalautismassociation.org/wp-content/uploads/2012/01/Lethal-Outcomes-In-Autism-Spectrum-Disorders_2012.pdf
2) Interactive Autism Network Research Report ASD Elopement, 2011 http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_elopement
3) National Autism Association Monitoring of Missing Persons with ASD