Autism Related Medical Diagnostic Code for Wandering - V40.31

Author: National Autism Association
Published: 2011/07/25
Topic: Autism Information - Publications List

Page Content: Synopsis - Introduction - Main

Synopsis: New medical diagnosis code for Wandering listed as V40.31 Wandering in Diseases Classified Elsewhere.

Introduction

Main Item

In a meeting of the Inter-agency Autism Coordinating Committee (IACC) held earlier this week, the approval of a new medical diagnosis code for Wandering was announced by Dr. Coleen Boyle of the Centers for Disease Control (CDC). When implemented in October, the new code will be listed as V40.31 - Wandering in Diseases Classified Elsewhere.

The creation of this medical code was spurred by a request from the National Autism Association (NAA) as part of the organization's ongoing efforts to raise awareness and create resources addressing the dangerous issue of wandering and elopement by individuals suffering from cognitive disabilities including autism.

Wandering incidents appear to be on the rise and the autism community has suffered unimaginable loss over the past several years. "It's rare for even a week to go by without reading a news story of another child with autism who has gone missing," stated NAA Board Chair, Lori McIlwain. "Far too many of these stories end in tragedy."

Because children with autism often have an impaired sense of danger, they are at serious risk of injury, trauma or death. Drowning is the leading external cause of death among individuals diagnosed with autism. Autism-related wandering incidents also present a unique set of challenges to first responders and search personnel, as many children with autism are non-verbal and unable to respond to rescuers. Training for law enforcement personnel is crucial to reduce the number of deaths resulting from wandering.

Preliminary data from a survey conducted by the Interactive Autism Network show that roughly half of children with autism attempt to elope, a rate nearly four times higher than their unaffected siblings. Fifty-seven percent of parents report that wandering is among the most stressful of all behaviors associated with autism; it can have a dramatic effect on quality of life for the entire family.

Caring for a disabled child who is prone to wandering is an around-the-clock job. Parents are often overwhelmed, sleep-deprived and exhausted. "It is our hope that the recognition of wandering as a medical diagnosis will bring opportunities for the development of resources including training for schools and caregivers, emergency search personnel protocols, financial assistance for safety equipment and support and education for families," said Ms. McIlwain.

The National Autism Association began addressing the issue of autism-related wandering in 2007 with the establishment of its FOUND program which provides funding for personal locating systems for those at risk. In 2010, NAA spearheaded the AWAARE Collaboration and developed a web site containing extensive information and resources. Most recently, the organization received a $50,000 grant from the American Legion Child Welfare Foundation to launch its Big Red Safety Box program providing families with safety items, tips and tools to prevent and respond to wandering incidents. The response from the community was overwhelming, completely depleting the resources in only six days. NAA hopes to secure additional funding through sponsors and private donors to continue this program in the near future.

For more information on autism-related wandering prevention and response, visit www.awaare.org

To learn more about the National Autism Association or to make a donation supporting NAA's safety programs, visit, nationalautismassociation.org

Editor:

Information from the CDC Website:

This code is intended to capture information about individuals, with any condition classified in the ICD, who wander. Wandering was deleted as a sub-code under the Alzheimer's and dementia code and added as a condition to be noted in association with disorders classified elsewhere.

The ICD-9-CM code for wandering (V40.31) 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.

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. 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 wandering code is not linked to a specific diagnosis, nor is it part of the diagnostic codes used for autism or intellectual disabilities. 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.