Lisa D. (chaoticidealism) wrote,
Lisa D.


On a cool April morning, an eight-year-old autistic girl walks along the road in a suburban neighborhood. She is wearing socks, but no shoes; she puts her toes down first onto the pavement, as though she is testing the waters of a cold swimming pool. She is wearing her school clothes, though her hair is still uncombed. No parents are in sight, but she doesn't seem disturbed by this fact; she simply keeps walking along the road. She doesn't know how to ask for help, and she doesn't know the way to her destination. She has not quite begun to engage in sophisticated reciprocal conversation and has never had a friend her own age; but her family says she is smart and eager to learn, and her teachers agree. Now she is outside, alone, more than a mile from home, and, one might assume, in danger.

In an attempt to prevent situations like this one, the committee editing the ICD is considering adding a code for "wandering" into the listing of conditions and diseases that doctors refer to when coding diagnoses. These codes are number sequences like "299.0" (the code which denotes Autistic Disorder), and serve as worldwide definitions of diseases and conditions with concrete descriptions that can be understood by any doctor, anywhere. "Wandering", a behavior which occurs in a wide variety of mentally and neurologically disabled children and adults, is defined as leaving the location where one is supposed to be--either without telling anyone, or without permission. Autistic children who "wander" like this have gotten themselves into significant danger when they left schools, homes, or day-cares. A "wandering" code would label people who are prone to this behavior so that anyone with access to their specific diagnosis would be informed of this tendency.

It sounds like a good thing, doesn't it? But, in reality, many disability-advocacy organizations--notably, those run partly or completely by disabled people themselves--are crying out against this idea. And so am I.

You see, I was that little girl. Like many autistics, I engaged in "wandering" behavior--leaving what seemed to be my safe home environment.

When I was eight years old, my mother married a sociopath. Rather than try to find out why I had meltdowns and could not tolerate the feeling of the wet rag I was supposed to use to wash the dinner dishes, he yelled at me, hit me, and pinned me down to the floor, where I panicked in full meltdown until I was too exhausted to move. The morning of the incident, I had been confronted by what must have been yet another transition-related, sensory-related problem--perhaps I could not tolerate having my hair brushed; perhaps I could not get dressed quickly enough; perhaps I refused to eat something presented to me at breakfast. While attempting to bundle me into the car, my stepfather became angry. I was crying, ashamed and frustrated, and I remember that he said that I should leave if I didn't want to live in his house.

So... I left. He let me go.

I walked along the road trying to find my grandmother's house for what must have been an hour or so. Finally my mother, combing the neighborhood in the family van, found me and brought me home. It wasn't until a year later, when my stepfather had died and I was in counseling for "bad behavior" (I was still not known to be autistic at that time) that I was able to articulate what my stepfather had done to me and to understand why it was wrong for him to mistreat me. When my mother heard me explain this for the first time, she was aghast at the realization of what I had lived through.

And that's why disability advocacy organizations don't like the "wandering" code.

Leaving the place where you are "supposed to" be is not something that someone merely does "because she's autistic" or "because he's got Alzheimer's" or "because she's developmentally delayed". It's not a symptom of a disease; it's a behavior that people display for a reason.

It can be a decision to leave a dangerous or threatening environment, as I did when I left the driveway and started walking down the road.

It can be a declaration that you want to do something for yourself, such as when a man with Alzheimer's tries to find the corner store to buy himself the milkshake that the nursing home cafeteria can't prepare.

It can be a simple decision to be somewhere, anywhere, where people are not watching you, monitoring you, and treating you with condescension--a desire for privacy, for autonomy.

It can be something you do because the place where you are is boring, and you want to do something interesting. It can be something you do because the world is too messy, too noisy, too bright, too smelly, too fast, and just plain too much, and you're leaving before your brain decides to go on vacation and leave you a frazzled mid-meltdown wreck.

When you cannot communicate adequately, maybe "wandering" is the only way you can say, "This place is bad. I do not want to be here. There is a problem here that I am trying to escape." At eight years old, I had been literate for five years and able to speak for nearly seven years. But I still couldn't explain what was happening well enough to make someone understand that what I was experiencing was not the discipline required by a bratty child, but abuse perpetrated by a short-tempered man who felt that hitting a child was a better solution than explaining what had been done wrong and how to correct the error.

Add a "wandering" code to the ICD, and you categorize that willful decision, that desire to escape, or that self-determination as a simple part of the individual's pathology. You give the professional--already in a culture that assumes that if a disabled person does something unusual, it's because they're disabled--the implicit permission to assume that wandering is simply another symptom to be suppressed. You cut off a route of communication; you cut off the disabled individual's autonomy. You open the way for restraints, seclusion rooms, and over-medication, all in the name of "safety". You increase the probability that a child with a "wandering" label will be segregated from a mainstream class he could otherwise benefit from attending.

The "wandering" code would do very little good, and much harm.

But let's not go too far here. Whether you are cognitively impaired, physically fragile, or simply eight years old, leaving a place where you are supervised can be a dangerous activity. You can overlook danger and be hurt. You may be victimized by unscrupulous people. You may be arrested by police who assume you are drunk or high. You may end up lost and tired, far away from medical treatment you need. This is a problem, and it does need to be addressed.

So how do we keep people safe without ruining their autonomy and ability to communicate danger or distress?

Well, first of all, "wandering" of this sort needs to be seen as what it is: A behavioral choice; a purposeful decision. Just like any behavior, it can be communicative. People do things for a reason, and leaving your school or your nursing home or your parents' house is no different. The solution is not to physically contain the person; it's to find out what they needed that caused them to leave and then to provide that thing--whether it's safety, meaningful activity, privacy, or something else.

The man with Alzheimer's trying to find himself a milkshake could have had someone arrange to have one delivered. The youngster trying to find a place away from the noisy classroom could be given a hideaway in the corner of the room--beanbag chair, noise-canceling headphones, weighted blanket. The situation a person is leaving should be analyzed: What's happening to the person that makes them want to leave? Sometimes, you can ask directly. I probably would have been able to explain, if asked specific questions, why I left home when I was eight. At other times, you have to look at the situation and the person and do a little puzzle-solving.

And yes, it's a good idea to record incidents of "wandering" in a person's record; but a simple ICD code is exactly the wrong way to do it. It gives no details. It doesn't differentiate between the youngster who leaves the room with the fluorescent lights, the youngster who leaves the room when he finishes his math homework ahead of everyone else, and the youngster who leaves the room because the teacher has been pinching him whenever she gets frustrated.

An ICD code is worse than useless. It's not the behavior that's really important; it's the reason for that behavior. A note that, "Jeffrey is bothered by fluorescent lighting and tends to try to leave the room if faced by a flickering bulb," is a useful tool for the next teacher who will teach Jeffrey. An ICD code that just says "wandering" means nothing.

Rather than stigmatize those who don't oblige us by staying where we put them, we should listen to what they are saying and understand why they leave.
Tags: disability rights
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