Effect of Wandering on Families
- Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
- 62% of families with children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
- 40% of parents had suffered sleep disruption due to fear of elopement
- Children with ASD are eight times more likely to elope between the ages of seven and 10 than their typically-developing siblings
People with autism spectrum disorders (ASDs) often “elope,” “wander,” or “bolt” from safe spaces. This behavior can be dangerous, and there have been many reports of fatalities, yet virtually no research has been focused on this subject.Recognizing the urgent need for information and intervention, the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration partnered with the Interactive Autism Network (IAN) to create a national survey on elopement in ASD. So far, more than 800 families of children with ASDs have completed the Elopement and Wandering Questionnaire launched on March 29, 2011. In this report, we share some initial findings, including the fact that nearly half of children with ASD between the ages of 4 and 10 engage in this behavior.
Preliminary results of this first ever investigation of elopement behavior in autism are shared to provide critical information for families, advocates, policy makers, and scientists. This is just a first look at such information, however, and we are continuing to collect elopement data from families of both children and dependent adults with ASD. You will notice that we are not yet reporting findings about dependent adults with ASD; this is because we have not yet collected enough data from families of adults, although we hope to do so in the future. Please encourage families of both children and adults on the autism spectrum to consider completing the Elopement and Wandering Questionnaire by participating in IAN Research.
Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASDs) living in the United States who choose to participate. They may not generalize to the larger population of families affected by ASD. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
What is Elopement?
The autism community uses many terms to describe the fact that children and dependent adults with ASD depart safe spaces to put themselves in harm’s way. A mother might say her son “is a runner” or that he “bolts” when they are in public places. A father might say his daughter “wanders” or “elopes." It’s difficult to name the behavior because we know so little about it. Is it aimless, or are these individuals trying to reach a place or person? Is it motivated by fear, sensory-sensitivity, boredom, or curiosity? Is the person who wanders scared, joyful, or in a fog? How many individuals with ASD engage in this behavior, and to what lengths are families going to keep them safe? Until now, there were few evidence-based answers to such questions.
For the purposes of the Elopement and Wandering Questionnaire analysis, we defined “elopement” as the tendency to try to leave safe spaces or a responsible person’s care at age 4 or older, beyond the toddler years when it is considered normal for a child to bolt from caregivers on a beach or in a store, or to leave the front yard and enter the street. Our goal was to find out how many individuals with ASD behave in a similar way, but far beyond the toddler years.
A Note About Our Sample
As of the date of this report, 856 parents had completed the Elopement and Wandering Questionnaire. Some of these parents were part of a pre-selected group who were asked to complete the survey, while others heard about the survey on their own and completed it due to their interest. For purposes of estimating how common wandering in ASD is, we will use only the pre-selected group’s responses. Why? Because this will reduce bias, scientifically speaking. (Families who completed the survey because they heard about it in the news, for instance, are more likely to be a group already interested in elopement because they have children who elope.)
Everyone’s responses to the survey will be used to address most other questions, like what motivates children’s elopement or when it tends to occur.
Preliminary Findings
Based on responses to the IAN Elopement and Wandering Questionnaire, it is clear that roughly half of children with ASD between the ages of 4 and 10 attempt to elope. This rate is nearly four times higher than for the children’s unaffected siblings. Between ages 7 and 10, almost 30% of children with ASD are still engaging in elopement behavior, a rate eight times higher than for their unaffected siblings. These figures are especially sobering when 35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means.
It appears that the elopement rate decreases from a maximum at age 4 to a low during the teen years, but then increases again. Could it be that adolescents with ASD not only become more restless and inclined to wander, but also are more capable of making an escape? We do not yet know, but hope that more data from families of older teens and young adults will help to answer this question.
Of children with ASD who attempted to elope, nearly half actually succeeded and were missing long enough to cause parents significant concern about their safety. The situations were serious enough that 32% of parents in this situation called the police. Furthermore, two out of three reported their wandering child had a “close call” with traffic injury, and almost a third reported a “close call” with drowning.
One major question involves why individuals with ASD leave safe spaces. Are they escaping a demand, like a tedious classroom assignment, or a sensory assault, like a noisy school assembly? Are they headed someplace fun and interesting, full of anticipation, or aimlessly fleeing with no thought of where they are going, anxious and panicked?
We asked parents to choose from a comprehensive list of possible motivations they felt were behind their child’s elopement behavior. As shown below, the top five chosen were:
- Simply enjoys running or exploring
- Is trying to reach a place he/she enjoys (such as the park)
- Is trying to escape an anxious situation (like demands at school)
- Is pursuing his/her special topic (as when a child fascinated by trains heads for the train tracks)
- Is trying to escape uncomfortable sensory stimuli (like loud noise)
Motivations reported seldom included “Is trying to get favorite foods,” “Is fleeing something that frightens him or her,” or “Is trying to reach a certain person he/she enjoys.” Considering the social deficits associated with ASD, it is interesting to note that reaching a favorite place was one of the top motivations chosen, while reaching a favorite person was one of the least chosen.
Read more at http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_elopement
JONESBORO, AR (KAIT) - The Craighead County Sheriff's Department has begun a new program designed to help search for special needs individuals reported missing.
For the past two days, officers have been training on a program called Project Life Saver. And Tuesday, that training was put to the test. It is a new piece of equipment will help officers locate individuals who have a tendency to wander, whether it's from Alzheimer or autism. The individual is given a bracelet with a transmitter attached, which can then be detected by a receiver. Officers spent Tuesday afternoon practicing mock searches to locate lost individuals who they called "the rabbit."
CUSHING — The body of a missing 4-year-old autistic child was found Tuesday afternoon in a duck pond a short distance from his home.
Blake Murrell was reported missing about 9:30 a.m. His body was found about 3:30 p.m. at 500 S Little, Cushing Police Chief Terry Brannon said.
The missing Cushing boy's body has been found in a pond just after 3 p.m. The Memorial Park Pond is in the middle of the park across from the 4-year-old boy's home.
CUSHING, Oklahoma -- Police are searching for an autistic, four-year-old boy who went missing Tuesday morning in Cushing.
He was last seen wearing blue pants with a green stripe on the side, and he is not wearing a shirt or shoes.
Police are asking Cushing residents to check their yards, sheds and any place a child might play or hide.News On 6 reporter Lacie Lowry said police are focusing their search efforts around a nearby pond.
Anyone who knows where Blake might be should call Cushing police at 918-225-1212.Police have not issued an Amber Alert for the child.
News On 6 reporter Lacie Lowry will have more on this story on the News On 6 at 5 p.m. and 6 p.m.
Lok8u NUM8 Plus Child Locator GPS Watch uses the same pinpoint precise GPS technology used in SatNav systems and is accurate to approximately 10 feet. Lok8u has developed their own proprietary Cell ID technology which provides a quick approximate location of your child. This is then refined using GPS to achieve an accuracy of 10 feet. The benefit of using dual locating technology is that the child can still be located in instances where normal GPS technology may not be sufficient. This action is driven via a mobile phone using the texting facility or via the internet using our secure Portal.
HALIFAX - Nova Scotia is introducing a new way of finding anyone with autism, Alzheimer's disease or other cognitive conditions who wanders off alone.
Emergency Management Minister Ross Landry says the radio frequency tracking system will use bracelets to help those who enrol if they become lost and confused.
The government says the need for the system was underlined by the death of seven-year-old James Delorey in 2009.
"We constantly have our eye on the door and on Michael, and it's a hard way to live," said Melanie Browne of Katy, Texas. "I think that's the hardest part of raising him, is just the wandering issue."
Autism groups are calling for greater awareness and study of what they call "wandering" or "elopement" behavior, referring to this habit of fleeing a place at any moment. Neither of those words accurately describes the phenomenon, but there's no better shorthand at the moment, says Dr. Paul Law, director of the Kennedy Krieger Institute's Interactive Autism Network.
Wandering is probably the leading cause of death among children with autism, Law said. Only limited data are available, but drowning seems most common among these fatalities.
Parents seek high-tech solutions to keep tabs on childrenLaval, Que., police say they have done all they can do to find a missing boy with autism and have ended their search and recovery mission.
Adam Benhamama, 3, has been missing since Sunday after he was last seen playing with his older sister at the home of a family friend.
Police believe he fell into the frigid waters of the Mille-Îles River, which runs just metres behind the home in the Auteuil neighbourhood of the city, north of Montreal.
The father had just stepped inside the house for a few minutes when his daughter rushed in to say that Adam was nowhere to be seen.
"We've done all we could do as far as the ground search and the river," said Laval police Const. Nathalie Lorrain.
Parents use GPS to track son with autism
Divers using sonar had searched the river for days but by nightfall on Wednesday they had come up empty-handed.
"There was no clue whatsoever, nothing has turned up — no piece of clothing, absolutely nothing," said Lorrain.
Lorrain said investigators will discuss Thursday if there is anything else they can do besides wait for the boy's body to surface.
Read more at http://www.cbc.ca/news/canada/montreal/story/2011/04/07/search-ends-laval-autistic-boy.html
MONTREAL - A close family friend of a 3-year-old boy missing since Sunday in Laval said Wednesday the child was only diagnosed with autism about a month ago and he was not completely deaf and mute, as media reports have said.
Chaker Chraibi said Adam Benhamama could utter some words and he was not completely deaf. His 4th birthday is June 22, he noted.
Speaking to reporters on the third day of an intense police search for Benhamama, now focussed mainly on the Mille Îles River, Chraibi said the boy's disapperance was a tragedy and a harsh reminder of how crucial it is to constantly supervise children. Benhamama went missing while he was playing hide and seek with his 7-year-old sister about 1 p.m. on Sunday.
"It's a terrible lesson for everybody to learn," Chraibi said, "but it can happen to anybody."
LAVAL, Quebec, April 5 (UPI) -- A missing autistic toddler likely drowned in a river near the Quebec home he was visiting, Canadian police said Tuesday.
The search for Adam Benhamma, 3, was concentrated on the Mille-Iles River in Laval, Quebec, the Canadian Broadcasting Corp. reported.
The boy, who disappeared Sunday while playing outside with his 7-year-old sister, cannot hear or speak. Their father had gone inside the house a short time before the sister rushed in to say she couldn't see her brother.
When a person goes missing, time is of the essence, especially when it's a child with autism. What was once used to locate Alzheimer's patients, a tracking device is now giving parents who have an autistic son or daughter some peace of mind.
The Morris family in Albemarle County is getting ready for a trip to the beach. On this vacation the most important item they're taking is probably a tracking device in case seven year old, Jake, goes missing. Jake's mom Stephanie Morris said it gives them more freedom.
"Something would just catch his eye and he would just be gone," Stephanie said.
Jake is autistic and has a tendency to wander away without telling anyone where he's going.
More ... Peace of Mind for Parents - NBC29
Autistic boy who can't speak or hear lost in Laval
Police intensify search for 3-year-old in woods and riverA three-year old boy who can't hear or speak and has autism has been lost since Sunday afternoon in Laval, Que., with police using dogs to search woods while divers comb an icy river.
Adam Benhamma was with his family visiting friends on Pointe-aux-Ormes Street in Laval's Auteuil neighbourhood.
Adam Benhamma, 3, has been missing since Sunday afternoon. Laval police
"He was playing outside with other children, and at a certain point he just disappeared," Const. Nathalie Lorrain with Laval police said Monday. "The children who were with him started looking for him and they couldn't find him."
The home is in a remote area of Laval, between a wooded area and the Mille-Îles River.
Police said the search for the boy was complicated by the terrain, as well as the boy's condition.
"It's almost impossible to communicate with him, and also if something happened he couldn't scream or anything like that," said Lorrain.
Police looked for the boy Sunday afternoon using sniffer dogs and the Quebec provincial police helicopter.
The search was called off at night, although Lorrain said four officers continued to comb local streets overnight.
Read more at http://www.cbc.ca/news/canada/montreal/story/2011/04/04/montreal-autistic-boy-missing.html
Special alert sought
A Kansas group wants law enforcement agencies to issue a special alert when someone with autism or a similar condition wanders away from a caretaker. The Mason Allen Medlam Foundation has gathered 11,000 signatures from people who support the creation of a Mason Alert, founder Sheila Mason said. Mason, of Colwich, Kan., is the mother of Mason Medlam, 5, who drowned in July after wandering from his home. She said she hopes to get 15,000 signatures and get an alert created. “The whole point is to keep these kids alive,” Medlam said. “Once they start to wander they are attracted to water.” Drowning is a leading cause of preventable death among autistic children, she said. There are 770,000 autistic children under age 18 in the United States. The petition can be signed at masonallenmedlamfoundation.com
Beth Martin, 31, mother of Savannah Martin, 7, a girl who drowned in Lawton in February
AT&T Wireless Network Connects EmSeeQ® Wearable Locator Device with Local 911 to Speed Safe Recovery of Individuals with Alzheimer’s, Dementia or Autism
FRISCO, Texas, April 4, 2011 /PRNewswire/ — EmFinders®, maker of the EmSeeQ® wearable locator device for individuals prone to wandering due to medical impairments, today announced AT&T will wirelessly connect its EmSeeQ bracelets over the AT&T network to 911 operators across the country to locate wandering or missing individuals.
The watch-like EmSeeQ device is specifically designed to quickly locate individuals with Alzheimer’s disease, Down syndrome, dementia or autism in the event they wander off or become lost. Upon notice by a caregiver, EmFinders activates the device which then places a secure call and communicates its location over the AT&T network to the nearest 911 operator, just like a standard wireless phone. The EmFinders system uses U-TDOA triangulation to accurately determine the wearer’s location, even inside buildings or in environments that would typically interfere with standard GPS locators.
The technology greatly reduces the search and rescue timeframe in wandering situations. EmFinders can typically locate the device wearer in less than 30 minutes—a rapid recovery that can save precious time and public resources and help prevent a tragic injury or death.
“For many, the EmSeeQ is a second line of defense that can help return loved ones home quickly and safely,” said Glenn Lurie, president of emerging devices, resale and partnerships, AT&T. “This is an important innovation that can dramatically improve the way some people live. By connecting through the AT&T wireless network, we’re using a tested location technology to help those who can’t call for help themselves.”
The EmFinders system has already been used to recover and return numerous individuals safely and quickly to the care of their loved ones in California, New York, Virginia and other locations across the country. The system is effective not only in the wearer’s immediate home territory, but anywhere within the expansive reach of the AT&T network, allowing individuals to retain their independence and travel without worry.
“Despite a caregiver’s best efforts, it only takes a minute to lose track of someone. The feeling of helplessness when you are desperately trying to locate that person can be a very painful and stressful experience,” said Jim Nalley, Co-Founder of EmFinders. “We designed EmSeeQ to give caregivers and their loved ones peace of mind and ensure that those who become lost have a safe and timely way home.”
For more information about the EmSeeQ wearable locator device, visit www.emfinders.com.
ShareThis
