Preliminary Data on Autism and Wandering

About a month ago, I wrote about the CDC's recent efforts to address the issue of wandering in autism and how the "Autistic Self Advocacy Network" (ASAN) was opposed to the CDC's actions.  I'm not going to go into all of the details here, so if you are interested in the details go read my prior post or one of the many other resources on the subject.

The part of ASAN's objection that I wanted to readdress is the idea that "the wandering diagnosis lacks meaningful research support."  Ignoring the obvious data points that existed before, there is now a new data point to consider in the form of a report from the Interactive Autism Network.  IAN is conducting a national survey on wandering in autism and has released some preliminary results based on the answers of 856 families -

Based on responses to the IAN Elopement and Wandering Questionnaire, it is clear that roughly half of children with ASD between the ages of 4 and 10 attempt to elope. This rate is nearly four times higher than for the children’s unaffected siblings. Between ages 7 and 10, almost 30% of children with ASD are still engaging in elopement behavior, a rate eight times higher than for their unaffected siblings. These figures are especially sobering when 35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means.

Keep in mind that these results are preliminary and are based on the results of an Internet questionnaire.  But at the same time, IAN is not some fly by night operation and has successfully used Internet based questionnaires in published peer-reviewed research before.  These results are also based on a good sized group so I think that these numbers have some validity.

I would draw your attention to the last part of the findings again - 1 in 3 children with autism who wander are unable to communicate who they are or where they live.  If you extrapolate that figure back to the entire population of children with autism, you will find that 15% of all children with autism wander AND are unable to communicate well enough to tell anyone who they are.

There is one other data point in the preliminary results that directly addresses another of ASAN criticisms.  ASAN is of the opinion that children with autism primarily use wandering as a means of fleeing stressful or abusive situations.

However, according to the results, only 33% of the children have used wandering as a method of "escaping demands/anxiety" and 27% have used it to "escape sensory discomfort".  But 54% of these children "enjoy exploring" and 36% "heads for favorite place".  So in other words, it is more likely that the child is blissfully heading into danger simply because they do not understand the danger rather than actively fleeing a hostile situation.

As the report says so well in closing -

Preliminary results of the IAN Elopement and Wandering Questionnaire demonstrate that elopement behaviors are a major problem for approximately half of families with a child on the autism spectrum at some point between the ages of 4 and 17; that eloping children encounter significant dangers; and that families of elopers are often stressed and socially isolated. This data validates long held concerns of families and advocates regarding elopement and ASD. It also gives us our first glimpse into the motivations and states of mind of these children while they are “wandering,” a word that may not fit what parents report: children who are often happy, playful, and focused on a goal when they depart safe spaces.

Or simply put, wandering appears to be a major safety issue in children with autism.  As a parent whose children are on the spectrum, these results are not shocking to me.  What is shocking is that an organization who seeks to speak for the rights of everyone on the spectrum is against dealing with a major safety concern.

ASAN, are you paying attention?