Starting this fall, wandering will be added to the list of descriptors doctors can use to diagnose individuals with autism, intellectual disability and other conditions.
The addition comes after a federal committee gave the final go-ahead on a proposal to make wandering a secondary classification that could be applied to individuals with developmental disabilities or other diagnoses.
Doctors will be able to start applying the new label as early as October.
“The proposed code is really intended to promote better data collection and understanding of this behavior,” Coleen Boyle, director of the Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities told a meeting of the Interagency Autism Coordinating Committee on Tuesday.
Boyle said that more than 6,000 public comments poured in earlier this year in response to the proposal to add wandering to the diagnostic coding system clinicians use, which is known as the International Classification of Diseases, or ICD-9-CM.
The bulk of the public response was positive, Boyle said.
However, the proposal was not without its detractors. Some disability advocates argued that it was inappropriate to apply a medical diagnosis to a person’s tendency to bolt from home or school since they said there’s no research to suggest that wandering is anything more than a behavior.
Now that the new code has been approved, guidance on how to use the wandering classification will be sent to clinicians in late August or early September, CDC officials said.
This is exciting news that the ICD-9-CM committee green-lighted the coding change. Since ICD-10-CM goes into effect in only two years, it would be helpful to alert providers about what those codes will for wandering as well. Online coding tools like SpeedECoder can help. I hope the CDC is aware.
Thank you for all the good information. I try to read everything you post to better educate myself. My son was just diagnosed at 12 years old. We have always thought he was but the doctor told us he could lable our son with many thing and wanted to wait for him to get older. Once again Thank You Jody :)
I have a daughter (17 yrs.) who is profoundly mentally retarded and cannot communicate well. She was diagnosed shortly after birth with developmental delay. At age 3 she began to show signs of wandering (escaping out windows, for example), but was always intercepted before she got very far. My husband (the children’s father) died about that time, too.
At age 6 my daughter managed to wander about 1/4 mile from home and Child Protective Services got involved. I narrowly escaped a charge of child neglect, but just being accused nearly destroyed me. At age 8 my daughter was finally diagnosed with Impulse Control Disorders (ICD). By then I was nailing windows shut, installing door alarms, and was sleeping during the day so I could stay up all night to keep watch on her. As she grew older and bigger her siblings and I could no longer just run after her and bring her home; we had to try to coax her back home (or back to our vehicle if we were in public).
Needless to say, we lived like prisoners because of ICD behaviors that included fire-setting, self-mutilation, raging and pulling out her hair. Wandering is also an ICD. The tension for us was unbearable; the older kids couldn’t have a normal childhood because their youngest sister was dangerous. The state of Florida even recognized her as a danger to herself and her family, and immediately put her on the state’s Medicaid Waiver program so that she could get special services. Those so-called services amounted to nothing more than a few hours of respite each MONTH. The wandering got to be such a problem that I finally had a breakdown just over a year ago. My middle daughter (adult) is now the primary caregiver for her sister.
To me, the idea that wandering is now recognized as a significant problem, and not just a behavior, means a milestone has been reached by the medical community. Had the decision been made twelve years ago, things might have gone quite a bit better for me when I faced the court. My daughter’s wandering is a serious and severe condition derived from her undeveloped brain and the resulting inability to manage impulses. It’s been a long hard road for me, but finding this article helped make things a little brighter. I urge parents in situations similar to mine, plus caregivers, teachers, social workers and CPS agents to not be so quick to judge (or accuse) a parent or guardian of a child or adult with mental disabilities. Until any one of these people walks in my shoes, he or she cannot identify with my challenges and certainly has no right to judge my parenting skills. I intend to help spread the word in the hope that other parents won’t have to endure the CPS hell I went through.
WELL HOPEFULLY IT WILL BE USED TO INSURE PEOPLE GET THE LEVEL OF RESPITE HOURS IN THE COMMUNITY AND NOT AS AN EXCUSE FOR REQUIRING A MORE RESTRICTIVE ENVIRONMENT.
“wandering” can also mean that a child or adult with ID is beginning to explore his/her world and is experiencing independence. My daughter did this for much of her early pre-teens. it was at times scary, but at the same time encouraging. Yes we had the fire department and police department show up a couple of times. But when it was over, we all had a good laugh at Austin’s efforts at independence. You gottta lighten up at times and enjoy the blessings that are given to you!!