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 diagnostic coding system that’s used by clinicians as a secondary classification that could be applied to individuals with developmental disabilities or other conditions.
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.
“If we have a diagnosis people are going to take this a lot more seriously,” says Wendy Fournier, president of the National Autism Association, which is behind the push to establish a code for wandering. “It is not a child misbehaving. This is a child with a cognitive difference who does not understand danger.”
Fournier’s group is collaborating with Autism Speaks, the Autism Science Foundation, Talk About Curing Autism and a handful of other groups in support of the CDC proposal, which they argue will save lives.
Specifically, Fournier says a medical label for wandering could lead to insurance coverage of tracking devices which can help law enforcement locate missing persons.
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.
Moreover, those opposed to the wandering code say such a label could end up justifying the use of restraint and seclusion.
It’s unclear exactly how big an issue wandering is. The only data collected comes from a small online survey that the National Autism Association conducted in 2007 which found that 92 percent of parents of children with autism said their child had wandered at least once.
CDC officials say that gaining a clearer picture of who’s affected by wandering is one reason to move forward with the wandering code.
“Use of the code in medical records can allow far better collection of data about the prevalence, risks and results of wandering,” says Coleen Boyle, acting director of the National Center on Birth Defects and Developmental Disabilities at the CDC. “Up to this point, information about these issues is largely anecdotal.”
Boyle says her agency rushed to include the wandering proposal in the current round of additions to its International Classification of Diseases, or ICD-9-CM, after the issue was first raised during an Interagency Autism Coordinating Committee, or IACC, meeting last October. Otherwise, there would not have been an opportunity until 2014, she says.
Once the public comment period concludes in early April, the proposal will undergo further review by a committee with representatives from several federal agencies that oversees the diagnostic code and, if approved, could be implemented as early as October.
In the meantime, the IACC is also calling for more steps to be taken on wandering. In a letter sent last month to Health and Human Services Secretary Kathleen Sebelius, the committee recommended researching the issue, developing prevention programs and creating an Amber Alert-type system for those with special needs who wander in addition to establishing a medical code.
Correction: This article has been modified to reflect that the diagnostic code is widely used by clinicians and is overseen by a federal committee made up of representatives from multiple government agencies.
It really is a shame that something as dangerous as wandering (while “under the influence” of lack of danger awareness) requires the PROFESSIONALS’ acknowledgement and legitimization to justify a coherent response. Fundamentally, this has nothing to do with diagnosis – people with dementia, TBIs, Alzheimers…
but, hey, the ASD label is a cash cow, so the pro’s milk it.
It is absolutely appalling that Ari N. and fellows are characterizing this as undercutting their rights and respect. These people do not have anything to do with Autism as I know it. They’re verbal – they can talk. They convey that their “feelings” get hurt, that others will have a “bad impression” and that they have a group identity – sense of self, constructing future abstract social implications, and -dare I say it? altruism – none of these attributes square with what I have read over the years, or with what I have personally experienced. The ONLY aspect is the lack of respect for human life and safety – that’s consistent with the anomie attendent to autism.
You are missing the key point here and I am autistic myself having been diagnosed at 39 as being an individual with Aspenger’s Syndrome. Not ALL autistic people can convey the feelings as easily as I can so wandering or leaving the situation at hand is the ONLY way they can convey to others they do not like what is happening. You cash cow label for ASD is pathetic and a cheap shot. Women with intellectual disabilities are FAR MORE likely to be taken advantage of sexually and not all of them have the ability to say Mr X raped or groped me. The only way they can convey it is to LEAVE and then hope some on will connect the dots and see that something is not right at all. It is NOT about undercutting rights and respect. It is about protecting those unable to voice their problems clearly and in a manner that can be easily understood.
It strikes me as odd to think that someone with a developmental disability or dementia would be considered to be “running away for a good reason”. To me this smacks of failure on the part of any professional that is working with the individual. That professional should be astute enough to recognize if there is a suspicion of abuse or neglect happening and therefore should have made the proper people aware of it. On the other end of the continuim there are disabled people that want to do unhealthy or dangerous things. An example of this would be a Prader-Willi patient that wants to run away because their food is controlled (by medical neccessity) and they do not like it
When I found my almost non-verbal 6 year old son barefoot in the snow a block from home with the dog and the sled, it was not an intolerable social situation he was trying to escape from, it was an absence of understanding why something was a bad idea. From ages 4-7, he took off almost half a dozen times; every single time it was in search of fun when he was bored. We were extremely fortunate that he never got hurt. But sometimes it took the police 30 minutes to find him. Fortunately, he outgrew the behavior before his luck ran out. Some kids aren’t so lucky. When he was little, they didn’t have the kind of tracking devices they have now. Families shouldn’t have to do without a device that could save their child’s life because they can’t get insurance to pay for it without a diagnostic code.
Abuse is by no means the exclusive bailiwick of people with ASD, similarly, “wandering.”
NTs faced with abuse, particularly the young, define the abuse as ordinary, and tend to endure it, and perpetuate the practice…
Fighting this, which allows “wandering” -aka “elopement” to be addressed, is a mistake. This may facilitate addressing the mechanism of elopement as a defense! and, at the same time, keep a CHILD from being raped by a predator (anecdotals describe tendency to strip before taking off), drown, get hit by a car…
and, catch this: children are a whole different legal entity from adults. Formerly known as high functioning have nothing to fear – unless there’s a legal finding of incapacity this will have nothing to do with you: you can do whatever you want. So back off!
Is wandering worthy of an ICD9? Not sure, it is a manifestation of a cognitive/neurologic impairment condition (like Alzheimer’s) like a fever is to the flu or a tremor is to Parkinson’s. Do those merit separate co-morbidity ICD9s or should they be bundled in the primary condition? One argument, and it is a good one, that if you have a code you can track it within the population. Interesting for documentation and epidemiological studies. Another point is that maybe it will help caregivers get reimbursed by insurance of tracking devices. But playing devils advocate, if with age my sense of direction is awful, should insurance companies pay for GPS devices? That is a whole different discussion.
The ICD9 is going to be replaced within three years with the ICD10–an unfunded mandate. The detail level to the codes will dramatically increase from 13,600 codes in the ICD9 to 69,000 in the ICD10. In my mind the key question is, will we have better medicine as a result? I hope so, a lot of effort is going into this.
My daughter, age 20, Down syndrome, used to wander off so frequently when she was younger that I ended up moving in with my elderly parents just to have two more sets of eyes on her. I couldn’t even go to the bathroom for five minutes without either dragging her in there with me or attempt some sort of call-and-response-play so that I would know she hadn’t taken off. I had to lock us into our home with a key I kept hanging around my neck so I could go to sleep at night and even then one night she figured out how to cut the ribbon holding the key and made her escape. I woke up to the police bringing her back home.
I had nightmares about this problem. She wasn’t running away from anything – she just wanted to know what was going on around the corner/across the street/in the neighbor’s home. She wanted to meet people and talk to them and she thought my social life was dreadful — which it is — so she was determined to get out and have some fun.
When she was mainstreamed into Catholic school for first grade, the teachers and administrative staff were surprised when she would just walk out of class and go to the next room to talk to the teacher or students. They had no idea how to handle it and thought that it was a “parenting problem.” Blame Mom. Might as well – Moms are guilty by default, I suppose.
I believe there are many traits common among those diagnosed under the ASD umbrella that are NOT part of the diasgnosis criteria. In my experience, MOST with Autism are prone to wander at least at some point in their lives. Does it really matter WHY they have wandered? The short answer is, no. Safety is #1 and the wandering needs to be addressed and the wanderER made safe so as to not wander again.
That being said, I understand the benefit of having the code, as ccampboyle pointed out: “Families shouldn’t have to do without a device that could save their child’s life because they can’t get insurance to pay for it without a diagnostic code.”
I don’t know the way insurance works in other countries, but here, a doctors note would suffice. If, in other places, it requires a “code”, perhaps the insurance practices are at fault here, not the diagnosis?
AS A CHILD I WAS GUILTY OF WANDERING AWAY SOME TIMES OUT OF BORDOM AND SOME TIMES A FORM OF EXCAPE (ONCE I LEARNED WHAT WAS HAPPENING WAS HAPPENING TO ME WAS CALLED ABUSE AND IT WAS WRONG) ONCE WHEN I WAS ABOUT 4 IT WAS NAP TIME AND I DIDN’T WANT TO SLEEP BUT SWING INSTEAD SO AFTER EVERYONE ELSE FELL ASLEEP I PULLED A CHAIR OVER TO THE DOOR AND UNLOCKED THE CHAIN THEN I HEADED TO THE PARK. .AFTER DARK I WAS WAS FOUND INSIDE A CHURCH A TOWN AWAY SPENT THE NIGHT AT A FOSTER HOME TOOK THE POLICE UNTILL THE NEXT DAY TO FIGER OUT WHERE I BELONGED. AS I GOT A LITTLE OLDER I COULDNT UNDERSTAND WHY MY “TIPICAL” BROTHERS AND SISTERS WERE ENCOURAGED TO WANDER AWAY FREQUNTLY “AND GO DOWN THE STREET TO PLAY. YET I WAS ALWAYS REMINDED TO STAY WHERE I COULD BE SEEN. ISNT WANDERING A NORMAL PART OF CHILDHOOD BEHAVIOR AND AT WHAT POINT DOSE IT BECOME ABNORMAL AND NEED TO BE LABLED?