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 CDC’s diagnostic coding system as a secondary classification that could be applied to individuals with developmental disabilities.
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.
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.
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.
With increasing frequency, parents of children with autism spectrum disorder (ASD) report the terrible consequences that can occur when their children wander or unexpectedly run away. One mother described the recent death of her child who had wandered away from her home, despite efforts to lock doors and windows. Recognizing the seriousness and urgency of this problem, Autism Speaks, the world's largest autism science and advocacy organization, vigorously supports the proposed ICM-9-CM diagnostic code and asks the autism community to sign the petition found at http://www.change.org/naa. In addition, Autism Speaks has joined the Interagency Autism Coordinating Committee in the call for action for Health and Human Services (HHS) Secretary Kathleen Sebelius to study the causes of wandering and elopement behavior, and to develop ways of preventing its occurrence.See the webpage for Autism Wandering Awareness Alerts Education (AWAARE)