Wandering: The Progress We’ve Made, And The Progress To Be Made

“Not all who wander are lost.” – J. R. R. Tolkien

I have a pin with these words printed on them; originally from a poem about the Lord of the Rings character Aragon, this phrase has been used to describe how some people may take a different figurative “path” from others–making different decisions, finding pleasure in different pursuits–but that they are not “lost”, or deviating from a “correct” route; they are simply “wandering” through the possibilities that life has to offer them.

But some who wander are lost (or are in danger of becoming lost),  and being aware of the dangers that wandering can present to certain populations can save lives, or at least better ensure the safety of some individuals.

A lot of children (and some teenagers and adults) with autism wander; a study by the Interactive Autism Network suggests that about half of all autistic children have a tendency to wander (or elope/bolt) from safe environments. Individuals with dementia and some mental health conditions also wander in a dangerous manner.

This is not to say that all “wandering” conducted by a person who happens to have these disabilities is necessarily “dangerous.” “Wandering off” isn’t that unusual of a behavior for people, especially younger people, to engage in. People, disabled or not, may wander because they want to see/observe something, because they want to escape unpleasant sensory stimuli, or simply because they find the experience of walking about unrestricted enjoyable (as is pointed out by Ari Ne’eman in a Vox article discussing wandering, which also uses the aforementioned Tolkien quote.  And I thought I was being so clever, too *sigh*). And so long as the person in question, disabled or not, is staying safe, then wandering about isn’t much danger.

Cognitive differences, though, can bring about danger in some circumstances. Some people with disabilities may have difficulties in assessing the relative danger of a situation and responding appropriately. Some may have a lack of ability to consistently rely on verbal communication to convey information about one’s address and one’s caretakers (as well as, in some cases, the cognitive ability to access said information). If a person is out in an unsheltered environment for an extended period of time, they may suffer from exposure-related symptoms, such as hyper or hypothermia. The fact that some people who wander are attracted to bodies of water or busy streets doesn’t help the danger; drowning is thought to be one of the leading causes of death for autistic children (some figures put it as high as over 90%), and run-ins with traffic may lead to injury or other unpleasant outcomes.

Many of the people who wander are under the watchful eye of an attentive caretaker–but no one can be aware of all aspects of their environment at all time (especially during one’s usual sleeping hours), and all it takes is a second’s distraction for a person to elope.

Fortunately, a lot of organizations are aware of this, and many steps have been taken.

There are swimming instructors that work with individuals with disabilities to reduce the risk of drowning; it is highly recommended that anyone who is wandering-prone, especially if they are attracted to water, be taught how to swim, if at all possible.

Many local police departments are being trained to handle individuals with dementia and developmental disabilities who are in a dangerous wandering situation.

The National Autism Association has a Big Red Safety Toolkit that includes pages of information about wandering, checklists, an elopement alert form to release to law enforcement,  visual aids that can be printed out to prompt the person to STOP, a social story template about staying in one’s house, a wandering log, instructions on how to include wandering-prevention measures into an IEP, and information on accessing local resources.

Kulturecity, an organization with many initiatives aimed at bettering the lives of those with autism and similar neurologies (those familiar with Toys AUCross America may be familiar with Kulturecity), launched the lifeBOKS campaign. lifeBOKS are toolkits for wandering-prone children that include a BuddyTag, a Bluetooth device that contains ID information about the wearer, has a “panic button” that the wearer can press, and alerts the parent/caretaker if the person wearing it wanders out of a certain range or into water; SafetyTats, temporary tattoos on which one can write down a phone number to contact if the wearer is lost; SmartKidsID, a QR ID that can be worn on clothing and that connects to a 24 hour hotline; and 120 decibel alarms that sound when the door/window they are placed on is opened.

None of these items from Kulturecity have GPS tracking. GPS tracking devices do exist, and some caretakers (of those with developmental disabilities as well as those with dementia)  do use them–parents have fought for the right for their children to wear them at school, in fact, and federal agencies will even help pay for tracking devices.

There are some concerns, however, that these devices would allow the individuals wearing them to be monitored by government agencies and have data collected on them without their consent. There are concerns that GPS tracking could be “hacked” by people with nefarious intentions. There are also, as raised by Nsikan Akpan of Medical Daily,  ethical concerns about the invasion of privacy of the person wearing the device, especially if the person is an adult; tracking asserts power over a person that may make the person being tracked feel subordinated. Akpan also notes that these devices will be used on people with specific diagnoses (such as autism or dementia) who do not necessarily require them–people who do not wander–as a “preventative measure.” Mrs. Çevik from The Autism Wars has an article that expresses the concern that tracking may increase the number of autistics and disabled individuals in the criminal justice system–when law enforcement intervenes, they may do so with the mindset of stopping a crime.

So there is a lot of awareness about wandering and a lot of practical steps being implemented to address it when it needs addressing.

But when it comes to saving lives, the more, the merrier.

Discussions about autonomy, about risk prevention versus respect for the individual being protected, about freedom versus security, still need to be held as often as possible–and wandering-prone autistics and people with dementia and mental health conditions need to be a part of this discussion, for they are the ones who can give insight into why and how wandering happens and as it is them to whom the bulk of the practices will be applied.

Awareness needs to be brought to even more police departments and more schools, but this awareness needs to include the awareness that people with disabilities are still people and should still be afforded the same respect as those without these disabilities.

It’d be nice, too, if members of the community at large were made aware of what to look for in a person who may be genuinely lost and how to respond, assuming that they do actually need help–how to check for ID/contact information, who to contact (generally, emergency officials), how to keep the person as safe and as calm as possible until help arrives, and so on (Alzheimer’s Family Services Center has a pretty nifty paper on such; ).

As with anything affecting…anything, really…awareness is often the key step.

Let us all stay vigilant.

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