The Autism Science Foundation Applauds Introduction of New Medical Code for Wandering

April 20, 2011

(Press Release) — The Autism Science Foundation applauds the announcement of a new ICD-9 subclassification code for wandering. Dr. Coleen Boyle, Director of the CDC’s National Center for Birth Defects and Developmental Disabilities, announced the formation of the new code this week at the Interagency Autism Coordinating Committee Meeting.

The ICD-9-CM code for wandering will become effective October 1, 2011 It is designed to promote better data collection for and understanding of wandering and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.

“There are individuals who, at times in their lives, may need additional services and supports to keep them safe” said Dr. Boyle. “Having a classification code can help facilitate recognition of this issue, when appropriate, for an individual so that the person, to the greatest extent possible, the caregivers, and healthcare providers can work together to develop an appropriate intervention and prevention plan.”

Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations—making this an important safety issue for individuals affected and their families and caregivers. A recent survey, conducted by the Interactive Autism Network and funded by a consortium of autism advocacy groups led by the Autism Science Foundation, recently reported that children and adults with ASDs and other developmental disabilities are at higher risk of wandering off than are children and adults without these disorders or other cognitive disorders. The survey, led by Dr. Paul Law of the Kennedy Krieger Institute, found that approximately 50% of children with autism eloped, with the behavior peaking at age four. Among these families, nearly 50% say that their child went missing long enough to cause significant concern about safety. 35% of parents reported their missing child had a close call with a traffic injury and 32% of parents reported a close call with a possible drowning. Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers.

Earlier this year, the Interagency Autism Coordinating Committee created a Safety Subcommittee to address wandering and other safety issues for children and adults with ASDs. ASF President Alison Singer serves as co-chair of this committee. Dr. Boyle, a member of the subcommittee, submitted a proposal for the wandering code to the ICD-9-CM Coordination and Maintenance Committee for consideration at the March 2011 meeting.

This code is intended to capture information about individuals, with any condition classified in the ICD, who wander. Wandering was deleted as a subcode under the Alzheimer’s and dementia code and added as a condition to be noted in association with disorders classified elsewhere [V40.31]. The intention is to provide a way to document, understand, and improve the situation for individuals who are at risk of injury or death due to dangerous wandering.