Wandering: A Dangerous New Proposal

Last week, the ICD-9-CM Coordination and Maintenance Committee met to discuss the future of medical coding in the United States. The ICD-9-CM stands for the International Classification of Diseases, Ninth Revision, Clinical Modification, and is the US government’s official system of assigning codes to medical diagnoses and procedures. The day before the meeting, the Centers for Disease Control and Prevention (CDC) posted for the first time information on the codes under consideration - including a new medical diagnosis for “wandering” related behavior in children and adults on the autism spectrum and with other developmental disabilities. If approved, this new coding promises to label hundreds of thousands of children with “wandering” diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment. Furthermore, this diagnosis carries no clear definition and the CDC’s proposal uses poor quality research to claim that it should apply to the majority of autistic children and those with other developmental and intellectual disabilities.

Labeling hundreds of thousands of children with a “wandering” diagnosis will increase restraint and seclusion in schools: One of the consistent messages from our community in last year’s advocacy for federal legislation to stop restraint and seclusion in schools was that when schools plan to restrain students, they do restrain students - frequently with tragic results. By labeling hundreds of thousands of school children with disabilities with a diagnosis of “wandering”, CDC will encourage districts to plan for the use of restraint for these students in Individualized Education Plans (IEPs) and school safety planning. Furthermore, by claiming that “wandering” is an unavoidable medical diagnosis instead of a behavioral response to specific circumstances, children with little to no communication needs may lose one of their last ways of making family members and educators aware of abusive or sensorily overwhelming environments: trying to leave a dangerous situation. Far from making children with disabilities safer, this proposal will enable abuse “in the name of treatment” and make it harder for non-speaking students to communicate problems to their families.

The “wandering” diagnosis lacks meaningful research support: There exists no research to classify “wandering” as a medical rather than a behavioral issue. This proposal is being pushed forward without meaningful research support. In fact, one of the few “studies” that the CDC does site is a 2007 online poll on the website of an advocacy group in support of this proposal claiming that this code could apply to as many as 92% of autistic children. An online poll on a web site mainly visited by supporters of the proposal is not a scientifically valid survey instrument.

The use of the “wandering” label on adults will enable abuse and restrict the civil rights of Americans with Disabilities: As children labeled with this diagnosis grow up, a “wandering” label could be used as a factor to justify guardianship - the stripping of legal capacity - in areas where it otherwise would not be deemed acceptable. Advocates of a “wandering” label make the case that its usage would enable insurance coverage for tracking devices, whose use for adults would restrict freedom of movement and make it harder for individuals to flee abusive situations. Furthermore, this diagnosis will increase the usage of more restrictive service-provision placements, like institutions and group homes, as a way of countering the “flight risk” that labeled individuals will be presumed to pose.

To express your concerns on this proposal, send an e-mail to to CDC’s co-chair of the ICD-9-CM Coordination and Maintenance Committee telling them to REJECT a medical label for “wandering”-related behavior. Her name is Donna Pickett and her e-mail is [email protected]. Act now - the written comment deadline is April 1st! In addition to sending a comment by e-mail, you can also follow this link to sign a petition to the CDC.

This entry was excerpted from an article published by the Autistic Self Advocacy Network, a non-profit disability rights organization run by and for Autistic people.

Update, 03/23/11: A FAQ with more information about the proposal has been posted on the ASAN website.

on 03/14/11 in featured, Politics | 4 Comments | Read More

Comments (4)


  1. Socrates says:

    I think we could do with some solid material with which to compose our letters. For example, there is already an ICD code for wandering associated with dementia - has this led to the effects on old people as predicted for autistics by ASAN?

    This is a very important issue and deserves a thoroughly well-researched evidence-based approach — general squeals of protest just won’t cut it.

  2. Gwen McKay says:

    Hello Socrates, good to see you here again — it’s been a while since you commented.

    In the United States, it was standard practice for many years to keep elderly patients restrained in nursing homes to prevent them from wandering. Although many facilities now use more humane practices, this progress didn’t come easily, and some old people in nursing homes still are being mistreated.

  3. Diane says:

    My grandfather was a “restrained patient” in a nursing home many years ago. Grampa was used to taking daily walked, when still at home, before the ahlziemer’s became bad enough to put him in a nursing home. When he still tried to take his daily walks - he ended up in a wheelchair with a locked table as a restaint. When this did not set well with Grampa, because he was not allowed to take his daily walk, or be let out of the wheelchair, he would get angry… and so then came the sedatives… Grampa only lasted 6 months after that… they killed his spirit and his body soon followed.

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