Frequently Asked Questions
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The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration is a working group of six national non-profit autism organizations whose mission is to reduce autism-related wandering incidents and deaths. To review our mission in full, please click here.
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A study published in Pediatrics showed that 49% of children with an ASD attempt to elope from a safe environment.
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Autism is a diagnosis that represents many symptoms, some of which can lead to serious health and safety risks, including death. In 2008, Danish researchers found that the mortality rate among the autism population is twice as high as the general population. In 2001, a California research team attributed elevated death rates in large part to drowning. Drowning, prolonged exposure, and other wandering-related factors remain among the top causes of death within the autism population. Click here to review recent cases.
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It’s not known, but because autism has increased from 1 in 10,000 in the 1980’s to 1 in 88 today, it is fair to say that the increase in wandering can be attributed to the increase in autism cases.
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Many reasons. Mainly, a person with autism will wander to either get to something or away from something. Like dementia, persons with autism gravitate towards items of interest. This could be anything from a road sign they once saw to a neighbor’s pool to a merry-go-round in the park. Other times, they may want to escape an environment if certain sounds or other sensory input becomes bothersome. Outdoor gatherings present an especially large problem because it is assumed that there are more eyes on the child or adult with autism. However, heavy distractions coupled with an over-stimulating setting can lead to a child or adult wandering off without notice. School settings are also an issue, especially those that have un-fenced or un-gated playgrounds. A new, unfamiliar, or unsecured environment, such as a relative’s home, may also trigger wandering, as well as episodes of distress, meltdowns, or times when a child or adult with autism has certain fears or anxiety.
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Awareness alone is a great tool. Prevention materials have been developed to educate parents and caregivers, and efforts on a federal level are underway to address the issue.
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Not yet. Conditions like Alzheimer’s and dementia do receive federal dollars to counter very similar wandering incidents, and the hope is that autism-related wandering initiatives may also receive federal support. AWAARE is working to ensure that resources become available in an effort to prevent autism-related wandering incidents and deaths.
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There are many preventative measures parents and caregivers can take to keep their child from wandering. Click here for prevention tips, safety tips, resources and general information. It’s VERY IMPORTANT that any parents, caregivers, and guardiansread this information and put the proper measures in place to prevent wandering. This includes anyone who may be caring for a child or adult with autism. It only takes one time for a person with autism to wander, and the risks associated with wandering are far too great to be taken lightly.
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Anyone with a known cognitive impairment may be at risk for wandering and the first time is often the worst time. Those with communication impairments are especially vulnerable since they may not verbalize a desire to go to a neighbor’s house or visit the pond they saw on the way to visit a relative. Because of these communication barriers, wandering can be very dangerous. Some children and adults may not be able to seek help if lost, or respond to their names when called.
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Many autism-related wandering incidents and deaths have occurred at schools, day camps, and day care facilities where common supervision patterns are in place; therefore, similar to dementia-related wandering, autism-related wandering cannot be solved by supervision alone. It’s important to understand that autism elopement is a medical condition, and that those with autism may take any opportunity to wander towards something or away from something whenever and however possible. Individuals prone to wandering often are reported as being keenly aware of when focus is shifted away from them, and will plan wandering attempts accordingly. It’s also important to understand that caregivers must cook, take showers, sleep, etc., and may have other children to tend to as well. Close adult supervision differs from around-the-clock contact, and it’s simply unrealistic for any human being to maintain complete focus on any one person or thing 24 hours a day. Close adult supervision is critical and any child or adult with autism should be closely supervised at all times. Accompanying measures should also be in place to secure the home, and ensure the child’s safety while preventing opportunities to wander.
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Autism-related wandering is a relatively new phenomenon. Currently, pediatricians are largely unaware of autism-related wandering incidents and how they can be prevented. The AWAARE Collaboration is taking steps to help inform the medical community about autism elopement so that proper information may be distributed and a healthy dialogue about wandering prevention can be established. There is currently no diagnostic coding established for autism wandering, but this is also something that AWAARE is addressing. Click here for a printable brochure that can be given to your child’s pediatrician.
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A false sense of security can be very dangerous, even if your loved one has never wandered. There have been cases in which children thought to be lacking the motor skills required to unlock a door suddenly figure it out. Other times, a child who has never shown interest in opening the fence gate suddenly gets the urge. Wandering incidents happen when we least expect them so it’s extremely important to always maintain close supervision and to regularly reassess and update home security measures as needed.
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Homeowners Associations often make exceptions in situations where a child is endangered or at risk. Click here for a printable brochure to share with your association’s members, and click here for stories that, while difficult to read, illustrate the gravity of the issue. Strict rules about fencing should never take priority over a human life. Yard fences, locked gates and close supervision can mean the difference in your loved one remaining safe or unsafe. Should a person with autism quickly flee for any given reason, barriers such as fencing could prevent the unimaginable.
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It’s a very controversial issue, but many parents report that installing locks that require a key on both sides is the only way to prevent escapes. This obviously is a very serious fire hazard, and should a fire occur, it would be difficult for you and your family to get out quickly. An Emergency Plan should always be in place whether it’s for a wandering incident, fire, or other emergency. For those with autism who are very intent on wandering from the home, fences that are not climbable are an option, along with a gate that’s padlocked with a key-lock or combination lock. Home Security Systems are also ideal for alerting you when your loved one has left the premises. Costs vary, but they are typically around $30 per month and oftentimes will reduce home insurance costs as well.
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Inexpensive door chimes are sold at places like Walmart and Radio Shack. Be aware that heavy traffic in and out of your home could desensitize whoever is supervising your loved one, so always have many security and alert measures in place. Click here for more.
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Many caregivers report that adhering stop signs to all windows and doors is extremely helpful in reminding their loved one not to leave. Because autism presents many difficulties in communication, red stop signs on doors, windows, and gates could visually prompt your loved one to stay on the premises. Nanny Cams are also used by some caregivers as a way to monitor their loved one from a separate room. Service dogs are another option parents use, as well as social stories and other resources. Again, these measures should be used in combination with proven home security measures.
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Nighttime wandering incidents may be reduced by implementing the following:
Increase physical activity. This advice doesn’t apply to everybody, but some experts believe that getting physical activity during the day can help prevent wandering at night. Even a supervised walk around the block before dinner may be enough to reduce nighttime agitation.
Focus on sleeping habits. Some conditions linked with wandering are associated with poor sleep quality. Wandering itself could result from sleeplessness. So do what you can to practice good sleeping habits with your loved one. As much as you are able, get her on a regular schedule of going to bed and waking up. To help prevent wandering, reduce napping during the day and cut out caffeinated drinks.
Consider if there’s an underlying cause. In many cases, a loved one’s wandering may not have a reason. But sometimes, caregivers come to understand that there’s a motive behind it and figure out ways to prevent wandering. If an individual with autism becomes agitated and wanders at night, maybe it’s initially triggered by something simple – being thirsty or hungry. Leaving a glass of water or a few crackers by the bed could help. A child with autism might have a fixation with certain sounds or objects and tend to wander off to investigate them. If you can predict what will attract his attention, you may be able to avoid situations in which wandering is a real risk.
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Yes. It’s critical that all trusted neighbors become familiar with your loved one and are aware of any wandering risks, especially for those who may appear tobe old enough to walk alone. More often than not, it’s a member of the public who has found a missing person with autism, and your neighbors could act as a guardian angel in emergency situations. Click here to print out a sheet detailing your loved one’s information, and plan a visit with your neighbors. If your loved one is unable to attend the visit, it’s critical that your neighbors have a recent picture. Provide a written list to them of any fears, likes and dislikes your loved one may have and always provide updated contact information. Be especially sure that any neighbors who have pools are aware of your situation as pools are a common attraction for those with autism. Click here to provide neighbors with general information about wandering. This is also important in case your loved one ever wanders into a neighbor’s home. Your child being mistaken for an intruder carries significant risk, so opening up a dialogue with your neighbors is a key step in keeping them safe. For more information on safety, visit http://www.autismriskmanagement.com.
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Yes. Click here to print a first-responder alert form. Fill it out and distribute it to local police, sheriff and fire departments. If you’ve moved, your contact information has changed, or your loved one’s appearance has changed, update the form accordingly. Keep one form on your person (purse, wallet) and one in a conspicuous area within the home. Make sure all photos and physical information is up to date. KEEP A JOURNAL OUTLINING DETAILS OF ANY WANDERING INCIDENTS, NO MATTER WHERE IT OCCURRED (HOME, SCHOOL, DAYCARE, RELATIVE’S HOME) AND DOCUMENT ALL MEASURES TAKEN TO PREVENT WANDERING INCIDENTS.
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There are many safety precautions you can take to prevent wandering, but teaching your child to swim is critical for their safety. Swimming lessons for children with special needs are available at many YMCA locations. The final lesson should be with clothes on. NOTE: Teaching your child how to swim DOES NOT mean your child is safe in water. If you own a pool, fence your pool. Use gates that self-close and self-latch higher than your children's reach. Remove all toys or items of interest from the pool when not in use. Neighbors with pools should be made aware of these safety precautions and your child’s tendency to wander.
The American Academy of Pediatrics does not recommend swimming classes as the primary means of drowning prevention. Constant, careful supervision and barriers such as pool fencing are necessary even when children have completed swimming classes. All families are encouraged to seek training in swimming, lifesaving, first aid and cardiopulmonary resuscitation.
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Consider a tracking device. Check with your local law enforcement for Project Lifesaver or LoJack SafetyNet services. These tracking devices are worn on the wrist or ankle and locate the individual through radio frequency. Various GPS tracking systems are also available. Click here for information about different options and pricing. Tracking devices alone should not be relied upon as the sole source of your loved one’s security. Close adult supervision, home security measures and other safety precautions should always be taken and routinely reassessed for updates when necessary. MEMORIZE YOUR LOVED ONE’S FREQUENCY NUMBER AND ALWAYS HAVE IT READILY AVAILABLE.
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No. GPS (Global Positioning System) and Project Lifesaver are very different. Programs such as Project Lifesaver, CareTrak and LoJack SafetyNet, are typically facilitated by local law enforcement and provide at-risk individuals with tracking transmitters that are assigned a radio frequency number. The frequency then transmits a signal that provides data on a person's location. GPS technology, however, depends on satellites to provide positioning and navigation information. The device communicates with satellites and figures out the distance to each and then uses this information to deduce its own location. In order for GPS to work, there must be a clear line of sight between the device and the satellites.
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Always call and ask, even if you doubt your county has the program. There’s always a chance it may be available, and if it is, be prepared to show documentation of your child’s diagnosis and past wandering incidents.
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On average, Project Lifesaver wristbands are a one-time cost of $300. Other nominal fees may apply to offset the cost of batteries and wristband replacements. Sometimes counties have funding in place to help cover the $300, but be prepared to budget that amount just in case.
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IT LOOKS LIKE MY SHERIFF DOES NOT HAVE PROJECT LIFESAVER. HOW CAN WE GET THIS PROGRAM IN OUR COUNTY?
For your Sheriff, the cost of Project Lifesaver will run around $5600. Compared to one search-and-rescue effort, a cost of $5600 is very small. However, many sheriffs either don’t have the budget, are unaware of the program, or simply can’t take on the program for whatever reason. A small community fundraiser can raise $5600 for the Project Lifesaver program, but the local law enforcement agency must want the program and be willing to facilitate it first. In some cases, even fire departments or a local church will facilitate the program.
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They both use the same equipment (radio frequency), but the cost structure is a little different. For LoJack SafetyNet counties, caregivers will pay $30 a month for monitoring. For Project Lifesaver, no monitoring costs apply, but $300 may be needed upfront to cover the cost of the wristband. Law enforcement agencies pay different costs as well.
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GPS technology is an option many parents may choose if other technology is unavailable or not ideal. For more information on tracking technologies, click here.
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Medical ID bracelets are available and will include your name, telephone number and other important information. They may also state that your child has autism and is non-verbal if applicable. Go to MedicAlert.com to learn more. If your child will not wear a bracelet or necklace, consider a temporary tattoo with your contact information. Click here for more information.
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Fill out all necessary forms, alert first responders and neighbors, and ALWAYS TAKE MENTAL NOTE OF WHAT YOUR CHILD IS WEARING. A Family Wandering Emergency Plan (FWEP) should also be developed with a step-by-step guide outlining everything that should happen after 911 is called. Your emergency plan should outline (contain a map of) your loved one’s most common locations of interest and have at least one emergency contact assigned to immediately contact neighbors. Your neighbors’ information should be kept up to date and readily available.
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ALWAYS CALL 911 IMMEDIATELY IF YOUR LOVED ONE IS MISSING.
State that they have a cognitive impairment, provide the diagnosis and state that they are endangered and have no sense of danger.
Provide your child's name.
Provide your child’s radio frequency tracking number (if applicable).
Provide your child's date of birth, height, weight, and any other unique identifiers such as eyeglasses and braces.
Tell them when you noticed that your child was missing and what clothing he or she was wearing.
Request an AMBER Alert be issued.
Request that your child's name and identifying information be immediately entered into the National Crime Information Center (NCIC) Missing Person File.
Once you’ve done that, implement your Family Wandering Emergency Plan(FWEP)starting with searching the areas your child would likely be.
OTHER TIPS:
After you have reported your child missing to law enforcement, call the National Center for Missing & Exploited Children (NCMEC) on their toll-free telephone number: 1-800-THE-LOST (1-800-843-5678).
If your child disappears in a store, notify the store manager or security office. Then immediately call your local law-enforcement agency. Many stores have a Code Adam plan of action— if a child is missing in the store, employees immediately mobilize to look for the missing child.
Understand and encourage media involvement.
Be aware of volunteer search efforts.
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FWEP’S should be developed based on your family’s individualized needs. If you have a child or adult with autism who may wander, your FWEP should include the following:
A step-by-step plan of action should you notice your child is missing. The first step should always be to call 911.
Your Child’s Emergency Alert Form containing a recent photo, an updated physical description, your child’s frequency tracking number (if applicable), information about your child’s diagnosis and other medical issues, and emergency contact information
A fax number for your local law enforcement agencies. Always make sure local law enforcement has your child’s Alert Form in their system before an emergency happens, but be prepared to fax your alert form and provide a hard copy to law enforcement just in case it is not.
Emergency contact names and numbers. If you have other children who may need to be picked up from school, etc., during an emergency, assign a trusted emergency contact to be responsible for your children during this time.
Consider assigning five willing volunteers to be your ready-made search party. This can (ideally) include neighbors, nearby family and friends. Be sure to have their contact information on hand, and make sure they understand their roles in the search effort ahead of time. Assign different areas for them to search (i.e. Neighbor X searches the park on ABC Street, Family Member X searches the pond, Friend X searches backyards, etc.) Create a map of locations of interest ahead of time. Always search areas your child would likely be first.
Assign a trusted point person to immediately call neighbors should your child go missing, especially those with a pool or body of water on their premises, or those that may have some item of interest, especially if your child has gone there before.
Make sure your point person has updated contact information for your neighbors.
Enroll your neighbors in the http://www.achildismissing.orgdatabase, as well as your law enforcement agency. Should you child go missing, A Child Is Missing will send an automated call to homes in your neighborhood.
Your FWEP may also contain media contact information. Understand and encourage media involvement.
Read through this Family Survival Guide for tips on other information to include in your FWEP.
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It’s a common misconception that AMBER Alerts are automatically issued for any child who is missing. AMBER Alerts are typically only issued for a child who is seen abducted and believed to be endangered. To meet AMBER Alert requirements, the child must meet five strict criteria. Sometimes law enforcement will, in fact, issue an AMBER Alert for a child that has not been abducted if the child is believed to be endangered, but AMBER Alerts should not be relied upon as a guarantee for any child with autism who may wander off. MAKE SURE THE 911 OPERATOR KNOWS THAT YOUR CHILD HAS A DISABILITY AND IS ENDANGERED. ALWAYS ASK FOR AN AMBER ALERT TO BE ISSUED.
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Silver Alerts are often referred to as “AMBER Alerts for seniors,” but the truth is, the AMBER Alert system only applies to abducted children while Silver Alerts can be issued for missing adults with cognitive impairments, typically seniors with dementia or Alzheimer’s. Click here to learn more.
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It depends on your state laws and your local law enforcement, but most states only allow Silver Alerts for seniors or adults 18+ and AMBER Alerts are only for abducted children 17 and younger. Some states allow Silver Alerts for all ages, while others have age criteria the individual must first meet. Check to see if Silver Alerts are available in your area and what the requirements entail.
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Members of the general public can be critical allies should your loved one go missing, and alerts like these offer rapid-response systems. Depending on the state, alert systems mandate a ready-made search effort and enhanced communication efforts that may include media and other public broadcasting measures. In many cases, children with autism look like typical kids, or may seem old enough to be alone. Public alerts that provide descriptions of these children can greatly increase a child’s chance of being found quickly.
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ALWAYS CALL 911 IMMEDIATELY IF YOUR LOVED ONE IS MISSING. Fear of being judged as a bad or neglectful parent is understandable, but calling 911 is critical. Autism elopement is not a condition born out of bad parenting and many children with autism wander from other environments outside of the home, including school and day camps. It’s important to speak with your local first responders about your child’s tendency to wander. It’s also important to protect yourself as a parent by continually documenting all the measures you’ve taken to prevent wandering and to ensure your child’s safety. Keep this journal in a safe, accessible place and update it when necessary.
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No. ALWAYS CALL 911 IMMEDIATELY IF YOUR CHILD WITH AUTISM IS MISSING. Federal law (42 USCS § 5771) prohibits waiting periods for missing child reports. All missing children should be immediately entered into the NCIC database. If your child is over 18, they may be covered under the Silver Alert system. Check to see if Silver Alerts exist in your state. If not, and your adult child has a disability and/or cognitively functions as a minor, there should be no waiting periods imposed.
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There are currently no federal laws in place that mandate parental notification of wandering incidents, and sadly enough, your child could have wandered from school without your having been informed of the incident. Many schools will report incidents of wandering, but there have been reports of less significant incidents, such as a child wandering from a classroom to another part of the building, going underreported. Every wandering incident is significant enough to warrant immediate parent notification. In addition, every child who wanders or is potentially at risk of wandering, elopement and/or fleeing, should have a Behavior Plan developed as part of his IEP. Please click here for a sample IEP letter requesting immediate notification and a behavior plan. It’s important to observe and address these incidents to prevent reoccurrence. Failure to address known wandering tendencies and/or escape patterns could lead to a much more serious incident. It only takes one time for a child with autism to end up in a deadly situation.
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If your child’s school doesn’t have any architectural barriers (i.e., fences with locked gates) that would prevent your child from eloping from the campus, it should be noted in an IEP letter. Click here for a sample letter. This is important because it would document that only staff members could prevent your child from wandering from school grounds, and this could help you initiate stronger security measures.
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Carefully document every wandering incident, and find ways to work with your child’s school to address escape triggers and wandering patterns. A note from your child’s doctor noting these incidents could help provide sound reasoning for strong security measures, if not one-on-one supervision. You should also request that your child’s IEP Team develop a Behavior Plan as part of his IEP. Click here for a sample letter.
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Click here for a sample IEP letter. Your child’s school administrator, teacher, aides and IEP team should be alerted immediately of this. Failure to address known, preventable escape patterns and security breaches puts any child at great risk, especially those who tend to wander off. If the child is unsafe at school, the child should remain in a safe environment until the matter is fully addressed. All security and safety measures should be taken seriously and implemented immediately.
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In this sample IEP letter, it is noted that if any child is missing, an immediate call to 911 must be made. It’s important to call a meeting with school staff, administrators, and your child’s IEP team to make them aware of past situations, as well as educate them on the autism wandering issue in general. Many times school staff and day camp counselors feel as though a parent’s concern is exaggerated. Never allow them to minimize the seriousness of this issue. More often than not, mistakes are learned the hard way. Sharing stories of tragedies, however difficult it may be, can act as a sobering, but necessary reminder that all precautions should be taken no matter how confident the care provider may be.
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Your child’s safety outweighs all else. If it’s helpful, provide them with this wandering-prevention brochure and follow up about your concerns. Outline escape patterns, triggers, and make sure they understand that it only takes one time for a child to quickly slip away. Every setting should be a secure setting when it comes to your child’s safety. If it’s not secure or you have any doubts, it’s best to avoid the risk.
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Yes. This is actually the very time gates and doors should remain closed. During any gathering, one person should be assigned to supervise your child at all times and carry that responsibility to the fullest extent. Every member of your party should be aware of your child’s tendency to wander and a very sound plan should be in place to ensure your child’s safety during the gathering. The term “safety in numbers” sounds reassuring, but it’s definitely not in this case. Anytime heavy distractions are present, a child can slip away without notice, and because sensory challenges may be present, extra noise and visual stimulation could trigger wandering during gatherings.
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Safety and prevention measures should always be in place, and an emergency response plan should be readily available. If the camp setting is not secure, or lacks barriers that could keep your child from leaving, other strong measures…such as one-on-one assignment should be in place. However, anytime there is doubt about the safety of any setting, it’s best to trust your instincts and opt against the risk.
