Home > IAN, Science > Wandering Common & Scary; Research & Guidance Needed

Wandering Common & Scary; Research & Guidance Needed

The first major study on runaway behavior among children with autism confirms that it is both common and extremely stressful for families. Yet relatively few families are receiving professional help or guidance. These insights are among the preliminary results of the IAN Research Report: Elopement and Wandering, a project of the Kennedy Krieger Institute’s Interactive Autism Network (IAN) funded by Autism Speaks, the Autism Science Foundation, and the Autism Research Institute. For more, see our news report on the Autism Speaks Science page. And please leave us a comment about your experience.

  1. July 26, 2011 at 11:20 am

    Only the strong will survive…

  2. Amanda
    July 26, 2011 at 11:25 am

    Yes, my son wanders frequently and I have done everything I can think of to keep him safe. I’ve had him fingerprinted, DNA collected, stop signs on all the doors inside the house, he wears an id badge when we leave the house, and wandering is still an issue. He wanders in public and alot but more from home. I cant take him to the park with out another adult because he has run away a few times. Keeping him safe is our first and foremost priority.

    • Theresa
      July 26, 2011 at 3:35 pm

      I have done the same Amanda, Id tags, signs, gates everywhere, alarms on all doors….I keep thinking I haven’t done enough and I can do more!!!

  3. Carla
    July 26, 2011 at 11:37 am

    My Autistic son will be 4 in August and one of my biggest fears with him is him running out the door and disappearing. I recently this summer had to purchase a 40″inch tall gate for my deck so he wouldn’t wander off. Most of the time he tries to open the door to run out to his pool. But others times he will just bolt and start running thru the neighbors yards. Every time I turn around and see the kitchen door open I dread that he has somehow learned to open the safety latch on that gate. My biggest fear with him is him running off and getting lost. He is also non verbal. I have purchased an ID bracelet for him and have thought about purchasing an alarm for the door. It is a very stressful situation; I’m glad that there are actually studies being executed on this topic. The more information I can obtain to try and keep my child safe; the better it makes me feel.

    • July 26, 2011 at 3:23 pm

      My son is 4 as well, his birthday was in late April. My concerns have always been his lack of communication but like you I worry mostly about him running out the front door or finding a way out that we haven’t thought about. He’s so smart in some areas and so delayed in others. I did hear about this company that makes bracelets that can track people when they go missing. Originally for Alzheimer”s disease I believe. I’m going to check it further but I encourage you to do the same. I could use a little peace or mind, could you? John

  4. Nora
    July 26, 2011 at 11:46 am

    Our son is 19 and has taken off only 3-4 times so far but those times were very stressful and everyday we worry about the possibility of it happening again. We have taken precautions, putting up fences, gates, alarms on the doors, a driveway alarm, id bracelet, but one of the most helpful things recently is getting a really good behaviorist to help with this behavior. By the way the behavior is not elopement but not listening to the rules you set.
    They also make beepers by Locator8 if you can get your child to carry it or put in their pocket it will alert you if they out of a certain range. This is helpful in public places. Our son will not put things in his pocket. I have heard of putting them on shoes too. He has a communication device it is on but not a guarantee that he will be carrying it if he takes off.

    Hope this helps other parents with this issue. Notifying the fire dept and local authorities is a good idea and always have a flyer ready if it happens, I had a current picture and info on a sheet by our phone at all times just in case and it was very helpful. Even with all precautions there will be times it can happen keep a cool head and be prepared as much as you can before and after it happens.

  5. Peg
    July 26, 2011 at 11:55 am

    Hi Amanda, You have done so much already! I am a special educator .I know of some families who have tried various sound devices…For instance there are magnetic – bond devices to install on the doors and windows. they sound an alarm when the bond is broken as the door opens . Home Depot has them probably. There are also weight activated alert devices that sound an alarm from bed or chair when the person gets up (or down) . Nursing homes frequently use them. There are also pad – type things that can go on a floor near a doorway. A medic alert bracelet or plastic hospital type bracelet that fairly permanently stayed on, might also help, if he will tolerate it. You probably are way ahead of me , but just thought I would mention these few things. Maybe they will help someone else. Awesome you have done the ID and even the DNA ! Bravo to you!

  6. Damaris
    July 26, 2011 at 11:57 am

    @ Amanda – it is the same in my house. My daughter is 5 y/o. She does it no matter who is watching her at the time..with me, my parents & also at school. We have put locks on all doors in the house, but I worry all the time when in public and actually avoid public situations because of it. It seems there’s something inside her driving her to do it. No matter where she’s at the first thing she does is try to figure out the exit and run straight for it if shes let go. On safe places, Ive let her go to see how far she’ll go before she stops.. she never does stop.. she just keeps going. I’m worried about this ALWAYS when shes not with me.

  7. Frank Martinez
    July 26, 2011 at 12:25 pm

    There have been more than a few times, some during the middle of the night during a cold Chicago winter. He was waiting for his grandma coming home from work. It seems sometimes he just NEEDS to get out of the house at that specific time and he will make a break for it. Even with multiple family members on sight, this causes us much grief.

  8. July 26, 2011 at 12:48 pm

    That’s for sure Rhonda. We now have a door alarm and I purchased a Mommy I’m Hear Child Locator from Amazon.com for trips out, but I am still debating getting him a GPS too. That way he can use it at school without having a signal alarm like the Child locator does. What ever it takes it I have to buy an ankle monitor GPS as long as he is safe and secure I’ll be happy!!!

  9. stacey
    July 26, 2011 at 1:19 pm

    My daughter is 6 yrs and only runs aways from home we have to keep doors locked at all times.my biggest fear is here wandering off we never give her a chance in public so its just at home she will stack stuff up to reach the lock so its a none stop battle

  10. July 26, 2011 at 1:26 pm

    Please let me add that this study was also funded by the Global Autism Collaboration, of which the National Autism Association (NAA) is a partner. NAA’s initiatives to address autism-related wandering spurred this study and our organization was directly involved in the development of the IAN survey and its questions.

    For caregivers whose loved ones are at risk, we have developed a website with extensive information and free resources that you can use right now to help keep your child safe. The web address is http://www.awaare.org.

    Also, please feel free to join our Autism Wandering Safety and Prevention Facebook page at: http://www.facebook.com/AutismWandering

    With hope,
    Wendy Fournier
    NAA

  11. Jscarclar
    July 26, 2011 at 1:49 pm

    I wanted to let you know there is a great family emergency plan from AWAARE:

    http://www.awaare.org/docs/FWEP.pdf

    Also, you may want to check out SafetyNet – a bracelet with a radio frequency transmitter:

    http://www.lojack.com/safetynet/Pages/index.aspx

  12. Amy Carrillo
    July 26, 2011 at 1:59 pm

    In kindergarden my son wasnt feeling well they sent him to the office. the office called me and i called my mother in law to pick him up because i didnt have my car. I told the office and they sent him back to class to get his stuff and he got his stuff walked right out the front gate and headed home. only problem he was following his bus route which took him across railroad tracks and next to a river. THANK GOD my mother in law found him before he got that far. He had mamaged to cross a busy highway though. If I had know better i would have been harsher on the school but at the time my son was still undiagnosed.

  13. July 26, 2011 at 5:19 pm

    I used the link for additional resources. It said call 911. My son frequently wonders we have him wonder out of the house all the time (and at all times) no lock has worked.
    Ironically, he wondered off just after I read this. I call the police and now they have cited me for child neglect.
    I spend massive amounts of money and time on getting my 2 children on the spectrum help and treatment I worry constantly about them. And somehow I am still considered a neglectful parent.
    Can someone tell me how to work through this? We moved to a new area with little to no resources and work won’t allow me to move.

    • July 26, 2011 at 10:31 pm

      Laura there are bracelets out there that you can get for your child that they can’t easily take off and the organization works with the police to help you. I have a friend whose child is a wanderer like you describe and she has this bracelet for him that if he wanders off all she needs to do is contact the company so they can activate the tracker and the police to help them locate her son. You may want to look into that and you may want to get your doctor to write a note explaining this is part of his diagnosis just to have on you in case you get the police wanting to cite you again. I know having my pediatrician’s help has been very beneficial to me.

    • July 27, 2011 at 10:17 am

      Laura, it’s really important to have a conversation with your police department. Go to http://www.awaare.org and download the first responder form. You can bring this with you to the police dept and have them keep it on file should your child go missing. If your son is getting through locks, try adding new ones that are out of his reach. If necessary, use deadbolt locks that require a key. Also, install inexpensive alarms on each of your doors that will go off whenever they are opened. You can find them at local stores like Walmart and Radio Shack. We have a great deal of information and safety tips on the AWAARE site, I hope you will find it helpful. Feel free to write me if you need further assistance. wendy@nationalautism.org.

    • July 27, 2011 at 10:44 pm

      What city do you live in? You should be able to contact your state’s protection and advocacy agency for assistance. Your police department should be made aware of your child’s disabilty as well and how to respond to your family when needed in an appropriate way. Please download the 911 database entry sheet on our website at http://www.leanonus.org and complete that to ensure they add your son’s information to their data base. Here is a direct link also:

      http://www.leanonus.org/images/LEAN_On_Us_Emergency_Info_Sheet_and_911_Entry_Form.pdf

      Also go in and speak to their police chief and supply him with a copy of this document. Ask if his department has been trained specifically on ASD. If not ask if it would be possible.

      http://www.leanonus.org/images/LAW_ENFORCEMENT.pdf

      There are also free pocket cards for officers that can be printed out from this link:

      http://www.leanonus.org/images/LEAN_On_Us_First_Responder_Card_for_ASD.pdf

      Hopefully these resources can assist and you can obtain some assistance to help you with that charge and also support you to assist your son.

      Respectfully,
      Andrew Gammicchia
      President
      L.E.A.N. On Us

  14. July 26, 2011 at 10:25 pm

    My son is 18 and had wandered off many times. I don’t go to theme parks without another adult because of his wandering. At Disney he joined the Electric parade as it passed us. At the age of 3 he wandered out the front door and while I was pacing in front of my house on the phone with 911 someone from the neighborhood was walking with him to help him find his house ( this was before he was diagnosed). We had the latch hook locks on the front door and his bedroom door. When he got older that lock did not work, we have turned the door handle around on his room so that he can’t get out at night and wander. We also have it noted on his medicalert account so if he is found they can call that number and medicalert has every possible number to reach my or my family. He still wanders to this day. He wandered off at the Walk last year and just 2 weeks ago I got a call from my mom as she had “lost” him in a store and they had all employees looking inside and out for him. For my son, if something catches his attention he will wander away to check it out. He has no short term memory so he does not stop to think about rulles before he wanders off. It is extremely scary for me because he trusts everyone and would leave with people and not look back.

  15. Kevin
    July 26, 2011 at 11:44 pm

    My name is K. My brother, G, is 47 and was basically diagnosed with Autism and Mental Retardation at the age of 3. ( the diagnosis has become more complex over the years ). It is not a matter of coinsidence that his “running” – “bolting” – “eloping” started at that time. Unfortunately, it still happens to this day. He has been nick-named everything from Spiderman to Hudini because of his cleverness in planning his escapes and the quickness he uses in executing his plan. We examine the details behind each incident. Fortunately, he has been found unharmed every time.

    When we were younger, my sister and I would find him in places where we would take him that were familiar places to him: the parks and playgrounds, stores, skating rink, restaurants, a favorite aunt’s back yard, etc. But, as we got older, the area of his wondering got wider and wider, making it more difficult to find him. As we get older, each incident scares us with greater intensity. He does not have the ability to understand that he is prone to seizures without his medicine, other health factors associated with age, and, people aren’t as nice as they used to be – to put it mildly.

    We take every precaution we can think of to try to prevent him from engaging in the behavior. But every now and again, he outsmarts us. We have him registered with local, state and federal authorities. He has a staff member present 24/7. We try to keep him engaged in something / anything all the time he’s awake. The doors and windows at his residence and day program are alarmed. At home, we have the ability to lock the doors with a key from the inside and someone always has two eyes on him. He wears a med alert bracelet. We are examining GPS tags for his shoes and clothing. Techniques to discourage this behavior are incorporated into his ISP goals.

    Trust me. I’ve spent a few decades desprately trying to find a reason for this behavior. Especially considering that my other brother, J, 45 and also diagnosed with Autism and Mental Retardation, has not even attempted to bolt.

    If you’re a parent, sibling, guardian or caregiver, The best advice I could give is to make sure that you really, really know the person entrusted to your care. Know their likes, dislikes, physical and mental capabilities and limits. Know what makes them smile, laugh, cry, fustrated. That bond is critical for two reasons. First, it will be your inner guide in developing a prevention plan. Second, that would be useful information for authorities in the event your loved one decides to elope.

    Be well. Stay strong. Peace to you.

  16. July 27, 2011 at 8:52 am

    I see that I am not the only parent that is going through this with my three year old son. I have felt so alone in my neighborhood and feel as if I am the only parent who’s child attempts to just run…no matter where he ends up. He runs aimlessly, smiling, not aware of the dangers that wandering may lead him to. I’ve had to put bells and a chain on my door because he is now able to reach the bottom lock and one day he ran into the hallway. Once he even darted out into the street (luckily there were no cars coming). Autism definitely creates a safety issue for our children. Just reading some of your posts and seeing the things that you have done to keep your child “safe” is of great help to me.

  17. July 27, 2011 at 10:36 pm

    Thank you for addressing this concern for families who have a loved one with Autism. We would urge that parents who have children that may wander or elope to ensure you are prepared for any situation where you may have to call the police for emergency assistance. Autism Speaks has put together a great website page with a variety of resources for families to keep their children safe. Parents can access that information here:

    http://www.autismsafetyproject.org/site/c.kuIVKgMZIxF/b.5058283/k.BE40/Home.htm

    As the parent of a young man with autism, who at one time did wander and elope, I realize the nature of this issue. As a police officer I also know there is a need for training and community collaboration to keep those who may be most vulnerable safe. That is why L.E.A.N. On Us was founded in 2002 and we’ve been training first responders and developing curriculums and resources to assist in this area. I also was on the Autism Speaks Safety Project Committee and many of our resources are listed there.

    Please visit our website also for free information and resources at http://www.leanonus.org.

    A special note of appreciation to Autism Speaks for addressing this issue and assisting families in this area for years.

    Respectfully,
    Andrew Gammicchia
    President
    L.E.A.N. On Us

  18. Nan
    August 5, 2011 at 7:21 am

    As a parent of a child with autism, I worry. As a board member of a local West Michigan Autism group called ASWS.org, we continued to be contacted by parents for this issue. Over the past year, our board raised funds through grants and private donations to implement a program called Project Lifesaver with our local Sheriffs Dept. A couple of our board members committed themselves to get the receivers, train the sheriffs dept., interview families and get the support they need. Each individual is given a bracelet and if wander, the recievers are used to track the individual. There is a cost associated with this but we have covered the first year for each individual.

    For a parent, please contact your local autism group or sheriffs department to see if there is a similar program in your area. These programs exist and can benefit more than the autism community as a service.

    My heart goes out to each of you.
    Regards,
    Nan
    Parent of Drew, my sweet 7 year old and ASWS Board Member

  19. Wendy
    August 5, 2011 at 8:49 am

    My almost 6yo son who has high functioning autism, is extremely frienly and verbal, was a terrible wanderer when he was younger. I will never forget the time we were at the mall food court when he spilled his drink. We were right next to the counter. In the time it took me to grab a roll of paper towels that a food worker already had out for me and turned around to clean up, he was gone! I put my trust in a complete stranger who was sitting near us with her own children. She said, “oh my God, did your little boy run off? He was just next to you! I’ll watch your kids, go find him.” Just like that, I ran flat out. He was gone, completely gone out of sight. I went to the security booth instead of wasting time not knowing which direction he’d gone in. Within a minute, they had a call that he was in Payless shoes way down on the other side of the mall getting stickers from the girls working there. A security guard brought him back and started lecturing me on needing to watch him better. I turned around and walked away while he was still talking. I really didn’t need a lecture!

  20. Oma
    August 5, 2011 at 2:39 pm

    My 5-year old grandson is a “runner” and has no sense of danger at all. He has darted into the street several times, which were heart-stopper incidents. Thankfully there was no traffic, but it has made me extremely careful to hold his hand the minute we walk our our door onto the drive-way. I have a deadlock on the front door and keep the key close to the door, but high and out of reach and sight. The sliding door to the backyard is thankfully hard to open and he hasn’t figured that one out yet, but it is definitely a concern for me. Also, when out in public he has run away inside a store a few times, so he now has a “dog tag” type necklace with his name and my phone number when we go shopping. I used to keep him in the shopping card, but he’s just too big for that now so he walks with me and helps me push the cart while getting groceries. I constantly reinforce safety rules and hope that repetition will help it sink in that running away is very dangerous. Still it remains one of my biggest concerns and challenges.

  21. August 6, 2011 at 9:56 am

    My non-vocal 11 year old is a runner and we have successfully reigned him in with biomedical fingerprint locks on the inside of our doors at home. We have to leave one door without one in the case of a fire, but on that door we have an ear piercing magnetic alarm. I also have a subscription for angelalert. It is a gps item that can be tethered to your child (I slip it in his cargo pockets when he’s not looking) and it can tell me where he is at all times. I text a number “where” and it sends me a map. Our son also has now decided that since his older siblings are now driving, that he should be able to also. We have to lock up our car keys so he won’t be able to get at them. Just the newest of many many challenges we face.

  22. BSS
    August 10, 2011 at 8:03 am

    I think it is extremely important to make parents of autistic children aware of the fact that if their child wanders, they could face scrutiny and potential problems with child protective services. If you do the research, you will find that many parents have lost custody of their autistic children to the state because their children are autistic and behave as autistic children do. There are many, many instances of grave mistakes made by child protective services because they are uninformed.

    It is imperative that parents of autistic children be aware of this and learn how to safeguard against losing their children due to a misunderstanding with an uneducated CPS worker. It is also imperative that CPS workers be trained and informed on autism and everything that goes along with it.

    I understand that everything you post on your website you want to project a positive attitude, but you are doing these children and their families a great disservice by not acknowledging that this problem exists.

  23. August 10, 2011 at 3:05 pm

    @BSS I couldn’t agree more. As a law enforcement officer I see first hand how people are judged and suffer for this. Being on the receiving end recently was frustrating because all the stuff post implies there is hope with the way things are now. This is not true hope will come when change begins. Few understand our situation fewer still want to understand.

  24. Kevin
    August 10, 2011 at 11:40 pm

    Every other kind of training is mandated by state or federal law. Why not specialized training on Autism?

  25. September 18, 2011 at 11:37 am

    It is really difficult to handle autistic children. Other people might look at them as a burden but others see them as a gift. An autistic child needs special attention from their parents or other people. Concerned people must seek advice from the professionals if they think they cannot handle the pressure or problem anymore.

  26. September 28, 2011 at 12:26 pm

    Don’t let common sense wander!

    I recently came across yet another news account about a child with autism that wandered off; luckily this child was found alive and safe!  

    http://www.recordonline.com/apps/pbcs.dll/article?AID=/20110919/NEWS/109190326/-1/SITEMAP

    Seemingly every week we hear the same story, simply in a different location. Often there is a happy ending; however, too often the ending is tragic. It is happening so often that there is now a family web-site that remembers children with autism who were lost forever because they wandered away from home.

    http://masonallenmedlamfoundation.webs.com/

    Make sure this doesn’t happen to your child. As a parent of a child with autism, you need to make life less stressful by setting up systems that ensure your child’s safety, without having to expend too much energy. Rest assured, there are active and passive ways to minimize your stress levels and maximize your child’s safety!  
 


    Passive protection:
    
 
    
• Alarm your home so that every time a window or door is opened, you can hear it through the warning beeps of the alarm system. This can be programmed to occur even when the system is not armed. The beeping allows you to monitor your child without necessarily having to see the child every moment. The minute you hear the beeping, then you can act (just make sure that you don’t run into your spouse since he will be doing the same thing!).

    • For a relatively modest cost, a GPS child locator device like a Wherify watch (with monitoring) is a huge technological leap. This is a financial commitment but if your child is a wanderer or an escape artist, it is definitely worth your peace of mind.  

    http://mightygps.com/wherify.htm

    
 
    • Teach your child how to swim. There is probably someone in your community who teaches swimming and understands how to efficiently teach your child to swim. The local pools and/or community centers are generally not the way to go. Ask around to find the person in your community with the reputation of being an effective swim teacher. Once your child is water safe, your worry about drowning disappears.

    
Active protection: 
 

    
• Lobby your school district to erect fences around the school yard with locked gates (which would protect the typically developing children from malfeasance as well). The child would then need to leave through the front door, which is often near the front office, generally manned by an adult and further away from the playground.  
 

    • Inform your school that the child is a flight risk and that you hold them 100% accountable for your child’s safety.  

    
• Make sure that your child is being supervised at all times by an adult, and not through the “buddy” system. The “buddy” system is bureaucratic speak for: “We don’t have enough staff, and the staff all want to eat at the same time. In order to make the staff happy, we have a child who is marginally older than your child, designated to take responsibility for the physical safety of your child. But, don’t worry, everything is under control… We’re professionals!” Please don’t countenance the buddy system for your child.  
 

    
Once you take care of your child’s safety needs, your stress levels will diminish and the number of crises should decrease as well.  Let’s make sure that the remembrance web-site for wandering children with autism does not grow by even one child.

    http://mightygps.com/wherify.htm

  1. July 27, 2011 at 1:02 pm
  2. July 27, 2011 at 1:06 pm
  3. July 28, 2011 at 10:39 pm
  4. July 29, 2011 at 6:12 am

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