Friday, April 8, 2011

On Autism and Wandering: We Need Data

Though wandering or "elopement" is not a safety concern exclusive to the autism community, it is a hot topic due to the Centers for Disease Control and Prevention (CDC) proposal to make wandering a medical diagnostic code. While those behind the proposal argue that codifying and diagnosing wandering will lead to increased data and a better understanding of prevalence, critics worry that a medical diagnosis for wandering could lead to involuntary restraint and abuse of vulnerable autistics.

At the Thinking Person's Guide to Autism, part of our mission is to support good science, and that starts with good data. With this in mind, we interviewed two advocates of the Interactive Autism Network (IAN)'s survey on wandering and elopement (escaping) among individuals with autism spectrum disorders (ASD): Lori, whose son Connor has autism and for whom wandering is a serious safety issue; and Dr. Paul Law, Director of the Interactive Autism Network (IAN) at Kennedy Krieger Institute.

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First, we talked to Lori, mother of Connor, who has autism and is a wanderer.

Tell us about your son Connor.

Connor is eleven years old. He was diagnosed with autism at age 15 months. He hit milestones up until nine months and began regressing from there. He lost eye contact, stopped babbling, began rocking and flapping, and he demonstrated an extreme fear of other people. By one year of age he could not tolerate certain sounds and his smile disappeared. He had no receptive or expressive language. An Occupational Therapist told us she had “nothing to work with.” From there we turned our house into an OT setting. He enrolled into a special inclusive daycare, and by age two, began smiling again. At age three he formed his first word. He’s been verbal since that time, but it was a gradual process. He is currently in a mainstream classroom with a 1:1 aide.

What does autism look like for Connor?



Connor’s autism is what many would consider “classic.” It’s not too far from the Rain Man stereotype. He rocks, flaps, hyperlaughs and has a good amount of echolalia. He has savant skills in some areas, and the extreme opposite in others. He is affectionate and sweet -- at times he is indistinguishable from afar. Low functioning is some ways, high in others. His inflections can be robotic, but he has progressed dramatically in spontaneous language over the last two years.

Connor’s behaviors, or stimming, have a tendency to disrupt his focus. Motivation, focus, anxiety and frustration are four key challenges.

Connor has an extreme fear of a certain word that is often used in everyday settings. At one time, he loved this word and how it was delivered on a particular children’s show. He wanted to hear it repeatedly -- I could never rewind it fast enough for him. It began turning into a negative. He would become very anxious about it not being rewound quickly -- he would scream and run away. It eventually led to an extreme phobia -- that was nine years ago. Avoiding it has become part of our lifestyle. If I could call every screenwriter in Hollywood and ask them to keep that word out of their scripts, he might be able to go see a movie or tolerate TV shows. We’ve tried everything imaginable to help him overcome it, but nothing had worked so far. 



If he hears it at school, he will have a violent meltdown. He will also bolt, which then leads to other issues at school, like restraint. 



Just how challenging is it to monitor Connor's wandering tendencies? How does he escape, and how frequently?



He mostly escapes from school. He began wandering off at around three years old -- mainly he would wander from his classroom into another part of the building. As he grew, he became better able to open exterior doors. Connor’s main fascination is Highway Exit Signs. At age seven, despite our pleas to never leave him unattended, he wandered from a school playground towards the highway to find an exit sign. A man saw him and stopped, then put Connor in his car. It took some time to find where Connor belonged -- he drove around the area. At that time, Connor could not answer questions. Eventually the man called the police. The school never called the police to report him missing.

At home we have a strong system for monitoring him. I never stray too far from the doors and he’s always where I can see or hear him. We have alarms on our doors, and stop signs adhered to each door. Our doors and windows remain locked. When everyone else is airing our their homes in the springtime, we stay locked up. I can’t imagine what it’s like for families that have no central air during the summer.

We have a fenced yard. He’s never outside alone. Connor also wears a Project Lifesaver tracking device. We’re fortunate enough to have it in our area. His grandmother has paid for swimming lessons -- again, fortunate. Overly confident, we left him with a babysitter about a year and a half ago -- we were gone maybe 45 minutes, and he left the house. She caught him before he wandered too far. He will always attempt to wander if he has a reason. At that particular time, he wanted to look for us. Other times, he wants that exit sign or to “go on an adventure.”



We’re very open with Connor about wandering, and we aren’t shy about letting him know what could happen if he enters water by himself, or runs into traffic. If you ask Connor what would happen if he walked or ran into traffic, he would answer, “Oooooh, you would get in danger.” His urges can overpower his reason. In parking lots, he’ll be more interested in flapping and running while he watches how his feet move along the pavement. We continually remind him to look up, look for cars, be aware. He’ll appease us for a few minutes and then go back into his stim. Our three-year-old daughter is more aware of danger than our eleven-year-old son.

Most of the time, he wants to be here at home, which is one of the best ways to prevent wandering in his particular case. We got him a laptop and that’s made a big difference. Now he Googles his favorite exit signs, draws them in the paint program, etc. He’s not so tempted to go off to see the real thing. And, honestly, it’s an all-you-can-stim buffet here at our home. If we don’t allow him to stim and do what he needs to do here, he will likely go somewhere else to do. Whatever makes him happy, we’ve made it part of his home life and we’ve been lucky in that respect.



School, on the other hand, is our biggest issue. In the last two years, Connor has wandered out of the school building (different school from story above) on two different occasions following a speech session with a resident speech teacher.  This is after countless meetings about his wandering, IEP discussions about his wandering, Law Enforcement resources to protect him from wandering, and a doctor’s note about his wandering.

The speech teacher allows him to transition back to the classroom on his own, but if the classroom is empty, he leaves the building. Fire Code prohibits doors from being locked, so this is an ongoing problem. Since both incidents happened under the supervision of the same person, it should be simple enough to get a different teacher. The school won’t allow this. They also will not eliminate that word he fears from their vocabulary. He bolts. For Connor, bolting is more dangerous than wandering.

Do people take you seriously when you tell them about Connor's wandering inclinations? Have you ever been accused of overreacting?



They do not take it seriously. After our son wandered out of the school building again this past September, I wrote to the Principal, “At this time, we request that [teacher] no longer provide speech services to Connor. Safety first. We had hoped she understood our feelings after the last incident.” The School Principal replied: “I decide who serves students. [Teacher] will continue to work with Connor.” 


He also noted, “Connor is safe and our school is as secure as can be without violating fire codes and turning into a prison.” We only want our son to be escorted during transitions. Not a prison.

I believe that they believe the worst would never happen. Unfortunately, it’s happening across the country -- our children end up being their lesson to learn. The man who found my son didn’t have to stop or help. What if he didn’t? What if he was a predator? Schools are dismissive of this issue and routinely fail to acknowledge the ‘what if.’

In your opinion, how will gathering data on wandering and elopement help Connor and the autism community?



The current lack of awareness and understanding puts our children at greater risk. Awareness alone acts as an advocate for parents like me who find ourselves begging for our children to be protected. Data will help provide this awareness. It will also provide opportunities to look at important clues and patterns that may translate into more effective resources so that injuries and deaths associated with autism wandering may be prevented.



For my son, data collection is crucial for awareness-building. Without it, he will stay at the same level of risk at his school -- high risk. If school administrators receive warnings from sources other than parents, my son stands to be much more protected than he is now. I’m afraid that’s the only way they’ll take it seriously and heed the warnings. Emergency Protocols should be established. A disabled student with a history of wandering, or wandering attempts, should have a specific safety protocol. Parents deserve mandatory notification of when wandering incidents occur at school. Currently this is not being done.

For our community as a whole, data may lead to education, awareness, and access to prevention information and resources. Physicians and pediatricians are largely unfamiliar with the wandering issue in the ASD community. Currently, there is no central source for information. And again, I’m one of the more fortunate parents. We have access to Project Lifesaver and other resources. Parents need to be given a chance to access these same resources. Every child deserves to be safe. 

Looking ahead, data collection may pave the way to higher safety standards at schools and residential facilities. It is our greatest fear that we’ll leave this earth and our child will wander away from a facility and die alone. 



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We also talked with Dr. Paul Law, Director of the Interactive Autism Network at Kennedy Krieger Institute.

Why is IAN's survey on wandering and elopement (escaping) among individuals with autism spectrum disorders (ASD) so important?


Anecdotally, we know that individuals with ASD have a tendency to wander, putting themselves at risk of trauma, injury or even death. There have already been too many heartbreaking headlines, yet solid information and data on this critical safety issue is lacking. Although similar behavior has been studied in Alzheimer’s diseases, virtually no research has been conducted on this phenomenon in ASD. The IAN Project’s survey on wandering and elopement will provide vital information to families, advocates and policy makers as they work to keep individuals with ASD safe. We intend to answer a number of important questions, including:
  • How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
  • Which individuals with ASD are most at risk? At what age?
  • What burden do efforts to thwart elopement behavior place on caregivers?
  • What can be done to protect individuals with ASD and support their families?
How do you define wandering/elopement?

As it pertains to ASD, wandering or elopement is the phenomenon where individuals with ASD leave safe places. The fact that it involves leaving somewhere defined as “safe” is important to note, as this is different from an individual with a disability intentionally leaving a situation that they feel is dangerous.

With that said, the words "wandering" and "elopement" may not ultimately be very helpful in characterizing the problem. For example, “wandering” is defined by Dictionary.com as "To walk or move in a leisurely, casual, or aimless way." This certainly does not describe the behavior that parents talk about observing in their children with ASD. Our survey will shed light on how best to characterize the behavior and perhaps even what to call it.

How is IAN's survey connected to the CDC's proposed ICD-9-CM code for wandering? Is the survey a parallel or a joint effort?

The CDC is a member of the Interagency Autism Coordinating Committee. The safety subcommittee, including the CDC, have been advocating for this wandering code. Members of the same committee funded the IAN Project to develop and implement this survey that will assist the autism community and all advocates in addressing this issue. Although not directly connected, our research is intended to help all policy makers, advocates and families in better understanding this safety issue and provide important information to   enforcement, medical, and technological decisions related to ASD and wandering.

Does the IAN survey address the concerns of autistic advocacy groups like ASAN, who are worried that "a code for wandering behavior could limit the self-determination rights of adults with disabilities"?

Yes, this survey will collect some data on how common wandering behavior is among older teenagers and adults.  The current lack of information on this behavior makes it very difficult to know how the rights of individuals might be affected and the role that restraints play in limiting wandering. At this point we have very little solid data on wandering behavior. Once we analyze the result of our research survey, we’ll be in a better position to understand both the behavior and the impact of things such as medical codes, tracking devices, etc. We invite the ASAN and other groups to use the survey to share their experiences and feedback.

However, it should be noted that our survey was not made available to independent adults with autism since by definition they are considered to be "under their own supervision."

Who do you need to respond to the IAN survey? Only families whose loved ones with autism elope?

It is critical that we receive information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

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Additional perspectives on autism, wandering, and the CDC's proposed code