Another Likely-Neurotypical Child Wanders from Home – and the 1%

This time of the year, we hear the frightening stories of yet more neurotypical children wandering from home.  For instance:

Okay, maybe we don’t hear about these things often.  We hear about how autistic kids wander away from home, sometimes leading to injury and death.

I’ll start this by saying I have the utmost sympathy for any parent who can’t find their child, regardless of the neurological status of their child.  It must be absolutely frightening.  It has to make even a good parent feel as if they have failed as a parent.  And for parents who have children who are seriously injured or die, my heart grieves too.  I can’t imagine how awful that must be.

But there’s a lot of focus on how autistic kids run away from home, as if this is completely unusual childhood behavior.  Apparently, if your child is neurotypical, this is a non-concern.

This was reinforced by reporting, with the headlines talking about half of autistics bolting off, that referenced a recent study that, among other things, supposedly compared autistics wandering away with non-autistics wandering away.

It’s important to note that the study was a parent survey.  IAN, the organization that created the survey, defines “elopement” as follows: “For the purposes of the Elopement and Wandering Questionnaire analysis, we defined “elopement” as the tendency to try to leave safe spaces or a responsible person’s care at age 4 or older, beyond the toddler years when it is considered normal for a child to bolt from caregivers on a beach or in a store, or to leave the front yard and enter the street.”

We’ll come back to this.

In the study, they state, “Thirteen percent of siblings of children with ASD had ever eloped at or after age 4 and children with ASD were more likely to elope than unaffected siblings at all ages (Fig 1). For example, from age 4 through 7, 46% of affected children eloped compared with 11% of unaffected siblings. Likewise, from age 8 through 11, 27% of affected children eloped compared with 1% of unaffected siblings.”

“Affected” children have an ASD with appropriate scores on an autism spectrum diagnostic instrument (note that this instrument will classify people without a diagnosis as autistic and vise-versa).  The ultimate determination of “affected” was determined by parent self-reporting.  Also note that one incident of eloping during the child’s life put the child into the eloper category.

First, I’m not sure this passes the sniff test.  Really, between 8 and 11, only 1% of “unaffected” children ever decided to “leave safe spaces or a responsible person’s care?”  Since when?  I explored my neighborhood with typically developing peers, and I can’t say everything I did (or they did) was safe.  I can also say I remember sneaking out of my house occasionally – just like my peers.  I have a hard time believing all of my peers were the 1%!

So what gives?  What is going on here?

First, the study relied on participants to evaluate whether the wandering was actually “elopement.”  Obviously, once being in an unsafe place during this age range or once being without supervision was not elopement.  While the survey is not publicly available, the survey seems to be including a subjective evaluation of the wandering behavior – typical childhood play is not considered wandering, but something else is.  Most likely, this something else is behavior that the parents are worried about, which may or may not actually be tied to higher risk to the child engaging in those behaviors!

So, if a 10 year old non-autistic child wandering the neighborhood doesn’t cause the parent concern, it’s probably not considered “elopement” in this study.   Would the same behavior by a 10 year old autistic child be elopement?  I’m guessing that’s up to the parents.

Second, only parents with autistic children were surveyed – no survey was given to parents without autistic children.  So the “unaffected siblings” came from only families with an autistic child.   This is significant, since if parents of only “unaffected” children (isn’t that a yucky way of phrasing things?) were surveyed, it’s probably reasonably likely that the parents are a lot more worried about the safety of their non-autistic child than their autistic child, whether for good reasons (inability to safely interact with the world outside of direct supervision) or bad reasons (perceived, incorrectly, to be unable to safely interact with the world outside of direct supervision).  But regardless, they were typically much more concerned about the behavior of their autistic child when she was outside of supervision.

This study does have some useful findings.  Clearly, parents are worried about autistic children wandering.  And that’s a serious concern that needs serious attention.  But I’m worried when I see a subjective instrument with lack of good experimental control used to say autistic kids wander but neurotypical kids don’t.  I just don’t think that’s right.  Kids explore and wander off.  They get bored and leave those boring places.  They sometimes don’t come home when the parents would like.  This is true of neurotypical and autistic kids!  But that doesn’t necessarily translate into higher safety risks for the autistic kids.

In addition, there may be a significant survey bias present.  A New York Times article referencing the study notes that one of the primary investigators shares this concern.  The article stated, “Most of the respondents came from 1,098 of Interactive Autism Network’s most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.”

How could this be studied better?  It would be important to study neurotypical kids too.  Do they go outside of the boundaries set by their parents?  How often?  Do autistic kids take risks when wandering that neurotypicals do not?  What kinds of risks?  How can they be mitigated?  Are two boys wandering around the woods lost perceived differently because it’s not a boy by himself?  There are some real questions to answer.

Do autistic kids wander?  Yes, of course.  Do neurotypicals?  Yes, of course.  Do autistics wander more often?  We don’t know.

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