Wandering: A Warning

  • Posted on March 18, 2011 at 4:10 PM

ASAN has issued a warning and a call for action.  You can read a brief overview here if you did not get the message.

ASAN has many valid concerns and complaints about this proposal.  Generalizing any behavioral pattern based on poor research is unwise and irresponsible.  From a social justice perspective, attributing a diagnosis to a group of people for whom the diagnosis is accurate to an unknown percentage of the population is an act of stereotyping, which further demeans a minority group and raises serious doubts about the integrity of the medical community.  Furthermore, “wandering” as a medical diagnosis seems questionable in and of itself.

However, as a parent of three children who have exhibited wandering behaviors, I must also object with the language ASAN used to motivate their supporters.  First and foremost, I think it is inaccurate to assume this diagnosis will “encourage” schools to use restraints and isolation.  These activities do occur and they are dangerous.  They should be stopped.  But they are used by unethical schools and staff for the sake of their own convenience; a diagnosis will not justify the use of these methods to otherwise ethical and caring individuals.  Wandering is a safety risk and schools have a responsibility to address that risk and accommodate children who wander.  All three of my boys have wandered at one point or another, and their schools have addressed those risks and found ways to accommodate them, not with restraints or seclusion, but by ensuring their safety and giving them appropriate opportunities to explore their environments.  Parents and schools share responsibility for formulating an adequate and appropriate plan to address these concerns in a child’s IEP.  I also object to the suggestion that wandering is a reaction to “abusive or sensorily overwhelming environments.”  While this can be the case, wandering is a behavior with many causes.  All the wandering I’ve seen associated with autism has been about curiosity and lack of danger awareness.  Children are curious.  Those who lack danger awareness may seek to satisfy their curiosity in unsafe ways, including wandering.  Associating wandering with abuse is far too reminiscent of the “refrigerator mother” theory and other ways that have been used to suggest poor parenting as the culprit for complex behaviors.  Such a generalization can be just as dangerous as the one ASAN seeks to prevent.

It can take less than 30 seconds for a potential wanderer to get out and away from an unsecure environment.  Hyper-vigilance does not equal safety in such an environment.  Measures need to be taken, but they need to be taken in a respectful manner, i.e. not relying on restraints and seclusion.  Attention should also be paid to the environment itself.  If the environment is uncomfortable, then corrections should be made to that environment.  But caregivers must also be aware of other factors, like curiosity and limited awareness of dangers, when addressing safety concerns for a child who wanders.

Wandering is a real problem, and it can be terrifying.  Some children who wander go missing for days before he or she is found, if he or she is ever found or found alive.  That’s terrifying and harmful for everyone involved.  Even if a child is missing for only a few hours or even a few minutes, it’s terrifying.  Yet it serves no good purpose to turn this challenge into a stereotype.  It’s an individual issue and the solutions are individual and specific.  It is irresponsible for the Centers for Disease Control and Prevention (CDC) to attempt to make wandering—a behavior attributable to many factors—a medical diagnosis.  It is irresponsible for schools and other organizations to use such a diagnosis to justify harmful practices.  It is also irresponsible of ASAN to attempt to motivate their supporters by noting possible worst-case scenarios from a social justice perspective without also noting that there are real concerns about the safety of some individuals with autism.

4 Comments on Wandering: A Warning

  1. Kathleen says:

    I could not agree with you more…but I am finding that as a parent who is not on the spectrum-I am told that I don’t understand..I’m wrong..speaking from privilege(whatever THAT is supposed to mean) I grow increasingly annoyed at people who believe that they understand my children more than I do..this is just so upsetting to me…

  2. Stephanie says:

    I do understand! I definitely, definitely understand. For many, many people who discuss autism, it’s an us/them paradigm. Either the “us” are those with authority (parents, medical professionals, ect.) and the “them” is the “poor souls” who are lost in their autism (even when they’re obviously not), or the “us” are those with authority because they are autistic, and everyone else is the “them.” It’s sad. Afterall the us/them paradigm is working so well in politics, of course we should transfer it to dividing every other part of society. Of course we should.

    *sigh*

    Nobody knows your children as well as you do. Other people may be able to offer insight from their own experience from time to time, and that insight can be very valuable, but they do not know your children as well as you do; and if that insight is received over the Internet, they don’t know your children at all. Reading other people’s words gives you a feel for who they are, and who they share their lives with, but it’s like a picture (even a lot of pictures)…it is incomplete when compared with the reality of who they are.

    It’s ironic that self-advocates keep saying they have a right to be who they are, and yet some are unwilling or unable to apply that same individuality and self-hood to the children of the parents with whom they interact. You just can’t have it both ways and maintain cogency.

  3. Kathleen says:

    Thanks. Yes! The age old “Us/Them..some things don’t ever seem to change. There are so many blogs that I have come to appreciate for their insight- Sadly, there are many that I have had to stop reading for the exact reasons you stated.Yes, I see the irony as well. This petition stirred up a hornets nest in a sense. I find myself left with many questions…

  4. Stephanie says:

    I do, too. The questions have left me rather stagnant. On the one hand, I don’t think “wandering” should be handled by the CDC at all. I mean, what does the Center for Disease Control have to do with wandering, or autism for that matter? Really? On the other hand, I’m highly skeptical of action alerts that come across as partisan, which is most action alerts of any kind, but hey….there it is, I’m skeptical of action alerts.

    As a marketing writer and as someone who has studied journalism (sad that they have so much in common, but that’s a whole ‘nother issue), I’m altogether too familiar with spin. I rarely find it motivating or convincing. I know how it works, and it works on deception (kind of like the way the unions’ protests have been reported by both sides, but again…journalism is a whole ‘nother issue). I also know it’s used by special interest groups to motivate their bases; and that’s exactly what ASAN did. Whether that piece was intentionally deceptive or just a reflection of their viewpoint doesn’t really matter. The slant, the spin, the deception was there. And the CDCs reporting of it wasn’t any less spun, as far as that goes. So where do you go to be truly informed?

    Too many questions and too few reliable, unbiased sources for answers.

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