A medical diagnosis code for wandering was announced by the Centers for Disease Control Tuesday, a move intended to prevent wandering among people with autism and other disorders and diseases. The code will go into effect October 1 and will be identified as “wandering in conditions classified elsewhere” (V40.31). The code was announced at the Interagency Autism Coordinating Committee meeting in Bethesda, MD, and was welcomed by autism advocates. Although the code is not specifically linked to autism or any other disorder or disease, it is hoped that the code will improve safety for those vulnerable to wandering, which include those with autism, cognitive disabilities, and Alzheimer’s disease.
Wandering and subsequent drownings are leading causes of death for children with autism, who are often prone to wandering, fascinated by water, and unaware of danger. Many of these children are also impulsive and nonverbal. In 2010, at least nine children with autism died in the U.S. after wandering, all of them by drowning. The trend has continued in 2011, with multiple incidents of deaths due to wandering. For each death, there are countless near-misses of mostly young children with autism who wander from homes and schools.
According to the CDC, “Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations.” Preliminary findings based on parent responses to a survey by the Interactive Autism Network show that approximately half of children with ASD between 4 and 10 attempt to wander. More than half of parents who responded stated that wandering was the most or “among the most stressful ASD behaviors.” However, a majority of respondents said that children who wander were “playful and happy” or “focused” during wandering incidents, showing the lack of awareness of danger by those children.
Wendy Fournier, president of the National Autism Association, told Examiner.com the code is an important safety measure. “We hope that by acknowledging wandering as a medical condition, we can reduce the number of deaths in the autism community by creating the opportunity for the development of resources for families, training for first responders, support for parents seeking safety protocols at their child's school supported by their IEP, and establishment of support for families,” she said.
At the April IACC meeting in Washington, D.C., Officer Laurie Reyes of the Montgomery County, MD police department was one of many in attendance advocating for a wandering code. “Parents would immediately be educated on prevention as well as provided access to whatever tools and resources were necessary to prevent an incident of wandering from becoming a tragedy,” she told the IACC.
Also at the April IACC meeting, Lori McIlwain of the NAA spoke about the need to take action to prevent wandering. She said the NAA advocates for those with the most severe forms of autism: “The autism we represent is a very specific kind. Each time IACC holds a meeting, our autism is unable to physically be here and have any sort of tangible presence. Our autism does not have a microphone, seat at the table, or the opportunity to raise its hand.” McIlwain called for a “crisis-level response specific to their needs,” including a wandering code, to protect the most vulnerable.
Sheila Medlam, who lost her five-year old son Mason to wandering and drowning in July 2010, gave an impassioned speech to the IACC at its October 2010 meeting, raising awareness about Mason and other children with autism who died after wandering.
The IACC subsequently developed a Safety Subcommittee, which asked Health and Human Services Secretary Kathleen Sebelius to investigate a wandering code and examine the need for an alert for children with developmental disabilities who wander.
Since Mason’s death, Medlam has advocated for a Mason Alert program consisting of an alert that would be triggered when a child with autism goes missing, and a registry of children with autism and other disabilities. These efforts have helped raise awareness immeasurably among parents, advocates, and authorities.
The wandering code is one tool that is expected to facilitate desperately needed awareness of wandering among doctors, caregivers, parents, and those with disabilities. According the the IAN’s initial survey findings, more than half of parents responding said they had “never received any advice or guidance about their child’s elopement behavior from a professional, with only 14% receiving such advice from a pediatrician or other physician and only 19% receiving such advice from a mental health professional.”
Wandering is also a major problem among those with Alzheimer’s disease. The CDC states that the code is “intended to capture information about individuals, with any condition classified in the ICD, who wander.” Wandering was previously classified as a subcode under the Alzheimer’s and dementia code. The new classification enables wandering to be identified for any individual “at risk of injury or death due to dangerous wandering.” The CDC states that the ICD-9-CM “classifies behaviors and risk factors in addition to diseases and syndromes; as such, the wandering code is used in conjunction with other diagnostic and symptom or procedure codes.”
The wandering code could also potentially enable insurance to cover tracking devices designed to locate missing adults and children who wander, such as Project Lifesaver or Lifeprotekt. “We hope that safety equipment including locating devices, alarm systems, etc. will be prescribed as medically necessary and will be covered by insurance,” Fournier said.
While advocates say a layered approach with multiple precautions is essential, the code is an important piece of the puzzle in increasing safety for those with autism and similar disabilities. Fournier said, “The code validates that wandering is a serious medical problem affecting our children and families.”
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