Disability advocates are divided over a Centers for Disease Control and Prevention proposal to add wandering to the menu of descriptors doctors can use to diagnose individuals with autism, intellectual disability and other conditions.
Under the proposal, which is up for public comment through April 1, wandering would be added to the diagnostic coding system that’s used by clinicians as a secondary classification that could be applied to individuals with developmental disabilities or other conditions.
But whether or not a person’s tendency to wander away from home or school should be considered a medical issue is proving contentious.
Advocates for the proposal say that creating a diagnostic code for wandering would increase awareness and force schools, clinicians and the community at large to address the issue.
“If we have a diagnosis people are going to take this a lot more seriously,” says Wendy Fournier, president of the National Autism Association, which is behind the push to establish a code for wandering. “It is not a child misbehaving. This is a child with a cognitive difference who does not understand danger.”
Fournier’s group is collaborating with Autism Speaks, the Autism Science Foundation, Talk About Curing Autism and a handful of other groups in support of the CDC proposal, which they argue will save lives.
Specifically, Fournier says a medical label for wandering could lead to insurance coverage of tracking devices which can help law enforcement locate missing persons.
Other advocates worry, however, that labeling wandering as a medical issue is misguided. Ari Ne’eman, president of the Autistic Self Advocacy Network, argues that there is no research to suggest that wandering is medical in nature rather than a behavior that should be addressed through a social support system.
“For a lot of people with significant impairments, trying to leave a situation can be one of the only ways for them to communicate that they are facing abuse or facing an overwhelming situation. If this is put into a medical context then thought may not be given to why,” says Ne’eman whose group is working with The Arc, TASH, the National Disability Rights Network and others to oppose the CDC plan.
Moreover, those opposed to the wandering code say such a label could end up justifying the use of restraint and seclusion.
It’s unclear exactly how big an issue wandering is. The only data collected comes from a small online survey that the National Autism Association conducted in 2007 which found that 92 percent of parents of children with autism said their child had wandered at least once.
CDC officials say that gaining a clearer picture of who’s affected by wandering is one reason to move forward with the wandering code.
“Use of the code in medical records can allow far better collection of data about the prevalence, risks and results of wandering,” says Coleen Boyle, acting director of the National Center on Birth Defects and Developmental Disabilities at the CDC. “Up to this point, information about these issues is largely anecdotal.”
Boyle says her agency rushed to include the wandering proposal in the current round of additions to its International Classification of Diseases, or ICD-9-CM, after the issue was first raised during an Interagency Autism Coordinating Committee, or IACC, meeting last October. Otherwise, there would not have been an opportunity until 2014, she says.
Once the public comment period concludes in early April, the proposal will undergo further review by a committee with representatives from several federal agencies that oversees the diagnostic code and, if approved, could be implemented as early as October.
In the meantime, the IACC is also calling for more steps to be taken on wandering. In a letter sent last month to Health and Human Services Secretary Kathleen Sebelius, the committee recommended researching the issue, developing prevention programs and creating an Amber Alert-type system for those with special needs who wander in addition to establishing a medical code.
Correction: This article has been modified to reflect that the diagnostic code is widely used by clinicians and is overseen by a federal committee made up of representatives from multiple government agencies.