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Autism Community Reels: Three Drowning Deaths in One Week

Three Drowning Deaths of Autistic Children Highlight Need for More--and Better--Research (via Babble)The autism community is reeling with the news that three autistic children have drowned in just over a week. These tragic deaths highlight the need for more and better research into the issue of autistic wandering, more properly termed “elopement.”

Mikaela Lynch, 9, went missing on Mother’s Day. Her body was found three days later in a creek near her family’s Lake County, California, vacation home. Owen Black, 8, went missing in Perdido, Florida on Friday, May 17. His body was found two days later, in the Gulf of Mexico, a half-mile from where he went missing. On Saturday, May 18, 2-year-old Drew Howell wandered away from his family’s cottage. His family found him almost immediately, but it was too late: he had drowned in a nearby creek, about 100 yards away from the cottage.

When autistic kids wander, it’s not the same as what most people would call “running away.” The word “wandering” also kind of misses the point: autistic wandering isn’t just aimless wandering around; it’s an attempt to get to something or away from something. Elopement can occur for lots of different reasons, such as the child feeling overwhelmed and stressed. It can also just happen, for reasons not apparent to everyone else–but nevertheless important to the person doing the wandering.

A 2012 report by the Kennedy Krieger Institute found than nearly half of children with Autism Spectrum Disorders (ASDs) will elope. The problem is, that report was based on a parent survey, not a real, scientific study–so we really have no idea how prevalent autistic wandering is. Nor do we have any frame of reference for spectrum of elopement–how frequently does a child elope? How far does she usually go? Where does he go, and how much danger is he in? And most importantly, what triggers the elopement?

What we have is simply anecdotal evidence, and it’s not enough.

Bec Oakley is an autistic parent of two autistic children, and her son is an accomplished “escape artist.” Bec lives and breathes elopement, and her blog Snagglebox is a great resource on the issue. (It’s also a great resource on almost everything else related to parenting and educating autistic kids.)

“Anecdotal evidence is useful for understanding that a problem exists, but it’s not helpful when that evidence is used to make assumptions and draw conclusions,” Bec said in a recent email interview with me. “And when it comes to elopement we need to start asking the right questions.

“There’s a big difference between running from and to something,” she said, “and we need to understand these differences without the assumptions. Are these kids really drawn to water and traffic, or are these just the most dangerous or most likely hazards that they encounter? These are the things we need to figure out.”

Two of my four kids have autism. My daughter, who has both autism and ADHD, has wandered a few times, but in her case it seems more related to her ADHD than her Asperger Syndrome. She gets distracted, or lost in thought, or becomes fascinated by a pattern in a rug, and then she’s meandering in a different direction than the rest of us. There are a few reasons that I don’t consider this true elopement: she’s moving slowly, without a real aim or purpose; she’s not specifically trying to leave one place and go to another; and most importantly, she never actually leaves. In other words, she might wander away from me in a store to look at something (not really a big deal since she’s 12, verbal, and pretty independent), but she’s not ever going to leave the store.

My son once attempted to escape from preschool because he was so freaked out by the expectation that he was to hold hands with his classmates, sing a song, and walk in a circle. He bolted. Finding the doors locked, he curled into the fetal position under a table in the farthest corner of the room. This was his way of communicating that he was completely overwhelmed.

Julia Bascom of the Autism Self Advocacy Network (ASAN) echoed the idea that when kids–whether autistic or typical–take off, they are communicating something.

“These deaths are tragic, and we mourn the loss,” she said. “My heart goes out to these families. But there isn’t a simple or medical answer. We believe that behavior is communication, and that medicalizing behaviors makes it less likely for that communication to be heard.”

Of course, my kids’ behaviors are very, very different from those of my friend Marj Hatzell’s son, who escapes from his locked, deadbolted, alarmed, gated home on a regular basis. Marj is one of the most watchful, alert parents I have ever met, but yes, there are times when she must go to the bathroom, or check the dryer, or, you know, sleep. In seconds, her son–who is nonverbal–can be gone. Marj, the writer behind The Domestic Goddess, never feels like her son is truly safe.

Just as the autism spectrum reflects a wide range of abilities, elopement can mean a lot of different things, and simply surveying parents is not adequate research. Elopement of autistic children and adults needs to be studied in greater detail, and using better methods. The Kennedy Krieger study reported that parents gave the following reasons as to why they thought their children wandered:

  • Enjoys exploring(54%)
  • Heads for a favorite place (36%)
  • Escapes demands/anxieties (33%)
  • Pursues special topic (31%)
  • Escapes sensory discomfort (27%)

What would be of more interest to me would be a study that interviews autistic children and adults as to why they wander (or wandered). According to the Kennedy Krieger report, “more than one-third of ASD children who’wander/elope are never or rarely able to communicate their name, address, or phone number.” In other words, two-thirds of the ASD kids who wander have some communication skills. Why aren’t we asking them?

“We’re talking about kids who have an overwhelming need to be somewhere else,” Bec said. “To them, elopement is not about ‘choosing to leave a safe place to head for a dangerous one.’ Nobody will leave a place that feels safe in order to put themselves in danger. So for kids who are running away, the question should be why doesn’t the situation or environment feel safe or tolerable for them? How can we change that, or help them to leave the situation in a safer way? For kids who are running to something, why don’t they recognize the potential dangers? How can we help them get to the thing they want more safely?”

As with just about everything else related to autism research, what’s lacking are best practices to help autistic individuals cope with the stresses of the non-autistic/neurotypical world, and input from autistic individuals.

“Talking about this with autistic people would be a really good idea,” said autistic writer and educator Landon Bryce, who has written extensively about this issue of wandering on his blog, thAutcast.

“I would like to see research that involves schools and law enforcement and comparisons between autistic kids and the general population,” Mr. Bryce said to me in a recent e-mail interview, adding that scientific methods using real controls should be used.

Mr. Bryce brought up another interesting point: families are encouraged to register their children with local law enforcement, to alert them to the possibility of elopement, and “wandering” is a secondary classification under new diagnostic criteria, but we’re not really addressing the privacy concerns that emerge as those children become adults.

“We need research that tracks what happens to kids with this code as they age– is it removed? How is it used?”

The often-mentioned, but completely unstudied, issue of autistic children being attracted to water also needs to be examined in a scientific way. The National Autism Association (NAA) reported last year that in 2009, 2010, and 2011, accidental drowning accounted for 91 percent of deaths of autistic children age 14 and under subsequent to wandering/elopement. The NAA notes that it relied on “media reporting” to gather the statistic, not formal data-gathering. There’s also no control; the outcomes for autistic kids who wander aren’t compared to outcomes for neurotypical kids who wander.

Police departments and rescue workers are now routinely taught that if a child with autism goes missing, the first place you should check is water. I’m not saying that’s a bad idea, but wouldn’t that also be the first place to check for a non-autistic child, too? Assumptions and anecdotal evidence don’t really help us help our kids.

No one is saying that parents, advocates, educators, and law enforcement professionals aren’t working hard to protect autistic children. But the data we have is only a tiny step in the right direction. Elopement is a huge issue for many families, and it’s one that deserves more attention, and more research. It also deserves better research, using scientific methods and real controls. Parent surveys and “media reporting” aren’t nearly enough when you’re talking about the safety of our children.

Resources for families of autistic individuals who elope:

What’s the Deal with Wandering? An excellent post on the blog Snagglebox, written by an autistic parent of two autistic kids.

AWAARE.org, a safety initiative of the National Autism Association. AWAARE stands for Autism Wandering Awareness, Alerts, Response, and Education. AWAARE’s Facebook page is also a great source of support.

(Photo Credit: iStockphoto)

Read more from Joslyn on Babble and at her blog, stark. raving. mad. mommy. You can also follow Joslyn on FacebookTwitter, and Pinterest.

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