16 March, 2011

sorry this is rushed, but it's sort of urgent

There is a "wandering" code under consideration to be in the new International Classification of Diseases (ICD-9-CM). "Wandering" would be a diagnosis that could be given to people with developmental disabilities. The Autistic Self-Advocacy Network has a petition against the wandering code because it's likely to lead to the abuse of people with DDs. It's really important to sign the petition because there is an opposing petition that also has a lot of signatures, so if you would like to sign the petition it is here:

Anti-Wandering Code Petition

I don't always like to sign petitions if I don't know much about the issue, so I'll try to explain why I am against the wandering code if you are not sure.

I know that there are people with DDs, especially kids with autism, who do dangerous things like running into the street; and presumably this is what the diagnosis is intended to address. However, some problems with making it a medical diagnosis are:

1. It pathologizes actions that can often be better looked at as expressions of what someone wants or needs. If someone "wanders" dangerously, it is better for their family and staff to figure out why the person is doing that and try to a)address emotional and communication issues that may be leading to the behavior, and b)teach the person how to be safe, rather than treating them as "a wanderer." It's already way too common to write off DD people's actions as "just part of their disability" instead of seeing that they may be trying to express something.

2. The diagnosis is very vague, and it can and certainly will be applied to people whose behavior does not fit the most extreme examples. In support of the wandering code, the Centers for Disease Control and Prevention quotes a survey saying that 92% of kids with autism wander from safe places, according to their parents. I can't imagine what incredibly stretchy and general definition of wandering could possibly allow this to be true--I've known a lot of kids with severe autism (which I assume is what they're referring to), and while I know some who are very impulsive and not aware of where they are going, I don't think that this is a dangerous medical problem for most of them. I also know a lot of kids with severe autism who could not be considered to "wander" any more than non-disabled kids.

3. When someone gets a diagnosis that labels one of their actions as being dangerous and a medical problem, that makes it easier for people to control them in ways that are not ethical; for example, writing restraints into a child's IEP so they can be legally used in school, or making someone live in an institution. This is especially the case when the action that is being labeled dangerous is something that a)is very vaguely defined, and b)is something that a person may do when they are in an abusive situation. It's really scary to think that a person may be, for example, leaving their group home without permission because they are afraid, or running into a dangerous area because they feel depressed and hopeless; and because they have a wandering diagnosis, these actions will be seen not as actions, but as part of their disability and something to be corrected by keeping them under tighter control.

Wandering is not a diagnosis yet, and hopefully won't ever be, but I have seen something similar happen with diagnoses of "behavioral problems," "emotional disturbance," or "emotional behavioral disorder" (a lot of different terms are used but they mean basically the same thing). Yes, some people with and without DDs have serious behavioral problems. But as a staff person, I've met a lot of people with these diagnoses who were not any more violent or aggressive than anyone else. However, something many of them had in common was being agreeable and compliant to the point of having trouble expressing how they felt or what they actually wanted. I can't help but feel that this is a natural result of the way someone is treated when they have a label that encourages staff to see everything the person does as a symptom of a disease.

If you didn't sign the petition before, but would like to now, here it is again:

Anti-Wandering Code Petition

You can also email Donna Pickett who is the CDC's co-chair of the Coordination and Maintenance Committee for the new International Classification of Diseases. Her email is dfp4@cdc.gov and she is collecting public comment about the ICD-9-CM.

The ASAN Action Alert about the wandering code has more information about it.


  1. Thanks for the heads up! I appreciate your explanation, because it helped me to think about situations where my clients have been denied the possibility of being put on a community placement list due to the possibility of "wandering". Here's what I said on the petition:

    "As a music therapist working in an institution with individuals who have a variety of developmental disabilities, and many of whom are on the autism spectrum, I'm deeply concerned that this "diagnosis" would continue to create barriers to my clients having the opportunity to move out into the community. First, it is not a medical issue. Second, people's "wandering" habits vary significantly. A person who only wanders once in a great while would have the same label as someone who regularly elopes. Given that a very large majority of people who wander also do not use speech to communicate it is extremely important to consider the communicative elements of this behavior and work to understand why a person might need to resort to this particular action on such a regular basis. Third, wandering is a behavioral action. It is not a medical condition. To medicalize and, by doing so making this action pathological in some way, is simply adding another label to a person who already is perceived as a problem- coloring all of the interactions and service provision to be received by this individual. Creating further excuses to marginalize and pathologize people with developmental disabilities would be irresponsible and tragic."

  2. Wow thank you so much! What you wrote is awesome.

  3. Making it a diagnosistic puts the onus on the individual, not the staff/parent, I would think. Thus, "treatment" is an acceptable term. We already legally "treat" autism with everything from ABA to shock treatment...what will be the repurcussion of a new label?

  4. It does not take a medical label to create more attempts to keep these children safe. It takes a locked classroom door and more staff supervision. They should install a type of lock that a teacher can use a key for on the inside, that way no one could get cleaver enough to unlock it. And when they go outside, there needs to be constant staff supervision to make sure no one goes off campus or even out of the group. It is no doubt very difficult to watch after wanderers, but a medical diagnosis will certainly not make it any easier.

    I am one of those that wander safely. When I am bored on summer breaks, I often want to walk around outside during the day. It took a while to convince my mom that I would be okay, but eventually she allowed it, and I never let any stranger follow me or take me home. And I knew enough about street crossing that I would not get myself run over.

    It is not even the wandering behavior itself so much as the context. If it is done when someone should be in school, and when a child does not recognize the dangers or cars and predators, that is where wandering gets to be a huge problem. And of course, even if wandering is fun, sometimes they have to sacrifice their leisure for the sake of learning.

  5. I once took a class (cost $400), for training to be a Nurse's Aide. I enjoyed the class alright, finished 2nd of 38, but the week of 'on the job' training showed me that I did not want to work as one. Most typical Nurse's Aide job is at a Nursing Home, and I didn't like how they had us practically acting as 'prison guards' towards the residents.

    I decided I would not do that, and also, resolved that I would never become a resident at a Nursing Home. Still, I worry that it could happen, if I had a stroke or something like that. I'm not the kind of person who could easily be bossed around, or treated like a child, (which is what they freakin' do!), and I'm afraid my situation would be even worse if they were aware of my Dx.

    And that is why I'm against this idea. I know there are people who just like to dominate others, and they tend to gravitate to staff-type jobs. Neither side of that kind of relationship is for me.