We have a unique opportunity to provide protection for our family members from autism-related injuries and death, but we need to act quickly.
The ICD-9-CM Coordination and Maintenance Committee is currently considering a proposal to create a medical diagnostic code for wandering. A diagnostic code for wandering will help protect at-risk individuals who have a documented history of wandering and will help to avert dangerous restraint and seclusion practices.
ASF strongly supports the proposal to include an ICD-9 CM secondary diagnostic code for “wandering in conditions classified elsewhere” under subcode “signs and symptoms”, where it can be applied to a range of disorders including autism, as suggested by the Centers for Disease Control and Prevention. This is a critical addition to the diagnostic code. Every year, individuals with autism wander away from safe environments and are injured or killed due to drowning, exposure to the elements or accidents. Better data on wandering associated with autism and other developmental disabilities should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand wandering and develop proper emergency protocols and responses while supporting self-determination principles. A subclassification for “wandering” is an important, needed addition.
ASF is working with the National Autism Association and other autism advocacy groups to protect our family members from both wandering related injury (and death) and restraint & seclusion. This new diagnostic code has the potential to do both. Here are just a few of the reasons we support adding a diagnosis code for wandering:
- A diagnostic code for wandering in disabled minors could open up critical dialogue between physicians and caregivers that have an at-risk child with a history of wandering/elopement from safe environments.
- A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention-education for doctors, caregivers, school administrators and staff, first responders/search personnel.
- Many nonverbal ASD individuals are unable to respond to their name when called. A diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.
- Every disabled individual with a history of wandering – along with increased risk of injury, trauma and death because of wandering — deserves access to safety devices and prevention materials regardless of the caregiver’s income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their children/adults.
- A medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Oftentimes wandering is not viewed as a medical condition, but one of choice, bad behavior, or happenstance. This has led to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.
- Children and adults with ASD who suddenly flee, bolt or run (elope) because of a trigger are at greater risk of restraint. A medical code will help establish protocols that work to eliminate triggers, thereby eliminating the need for restraint.
Please take these two action steps right now:
First, sign the NAA petition in support of protecting our family members!
Second, send a brief public comment to CDC indicating your support for protecting our family members. Two or three sentences will suffice. Simply write: “I support the ICD-9 proposal to create a medical diagnostic code for wandering.” Share your family’s personal story with the CDC. The comment period closes April 1, 2011. Comments can be submitted by e-mail to Donna Pickett, Co-Chair of the Coordination and Maintenance Committee, at DPickett@cdc.gov
The Autism Science Foundation, together with other leading autism advocacy groups, is funding the first major survey to study, quantify and categorize the experience of wandering and elopement among individuals with autism spectrum disorders through the Interactive Autism Network (IAN). The survey is expected to be released later this month. Other funders are the Autism Research Institute, Autism Speaks, and the Global Autism Consortium.
ASF Blog 
I recently covered the petition at change.org on this matter and then did some additional examination of the IACC, the ICD-9-CM, and wandering behavior.
The first post is here: http://kwomblescountering.blogspot.com/2011/03/deconstructing-petitions-making.html
The second is here: http://kwomblescountering.blogspot.com/2011/03/asan-and-iacc-icd-9-cm-codes-and.html
I’ve added the link to this post on both pieces. Thanks!
Thanks Kim!
Thank you very much for bringing this petition to my attention. As a mom with 2 sons with severe autism I have had my share of wandering episodes. I have written a blog post about it and I hope to bring many more signatures to the petition because of it.
It’s interesting that the Autism Science Foundation supports an added diagnostic code that is not based on even the sketchiest of evidence-based methodology. The NAA has a survey of parents that suggests that 92% of parents asked said their child had wandered off at least once. Not that the NAA has resources to set up an experiment but I wonder if parents in a control group had been asked, if they also might have said their non-autistic child had *also* “wandered off at least once.” The fact that the CDC, which is supposed to be a reputable, science-based federal agency, is basing the decision to add a wandering code, brings the CDC’s credibility into question. All six of the supposed benefits you mention above, that would supposedly come from adding a wandering code, are speculative. There is no indication that a wandering code would make people more aware, more safe, be subject to less restraint rather than more (I can imagine someone with a “wandering” diagnosis being restrained for convenience by special education personnel, because who would want to take the risk of having someone wander off while they were responsible?! A child who receives a wandering diagnosis will carry it into adulthood. Some of the unintended consequences of this could be increased guardianship, inability to escape from abusive situations, limitations on adult people’s legitimate choices to go places without informing others, and assumptions that people with disabilities need “more supervision” throughout the lifespan, among others. The ONE thing that a wandering code will do is increase “data collection,” which would be a good reason for the CDC to adopt it. One “data collection” conversation coming out of the discussion on wandering, at the April 30 2009 full IACC meeting, included contacting people whose family members had died a “tragic death” to donate brain tissue. That short discussion can be found at page 319-321 of this document: http://www.iacc.hhs.gov/events/2010/transcript_043010.pdf Interestingly, in the same discussion, several more appropriate ways of dealing with wandering and safety were brought up and discussed, such as Project Lifesaver tracking equipment, swimming lessons, law enforcement training, and home security measures. No wandering code can address these practical matters. Thank you for reading.