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Autism & Wandering: 20 Ways To Help Ensure The Safety Of Our Autistic Loved Ones

June 1, 2013   Comments (2)

How To's Safety Wandering & Bolting

    

As the parent of a child with Autism, the dangers of wandering are constantly on my mind. My 18-year-old son, Michael, has little regard for safety. He will readily run into the path of a moving car, head for a pool or body of water, or allow the hand of a stranger to lead him away. The consequences of wandering can be tragic, as we are all too well aware. Only last month, there were three separate incidents of wandering that led to the demise of three beautiful children.

In light of these tragedies, I felt compelled to share some of the strategies that my husband and I and other families have used to help keep our children safe from harm. None of them are foolproof, of course, but when used in conjunction with each other, it is my hope that they will prevent other adults and children with Autism from meeting the same fate as Mikaela Lynch, Owen Black, and Drew Howell. This blog is written in their memory.

WANDERING PREVENTION TIPS:

1) Fences

autism and wanderingHave a proper fence erected in your backyard with a child-proof lock. Investigate funding programs or tax breaks for which you might be eligible as they do exist in some regions for those who must retrofit their homes to accommodate family members who have special needs.

Ensure that neighbors with swimming pools have their yards properly enclosed with adequate fences and locked gates.

Advocate for fences in school yards and playgrounds as well, using your child's IEP to support the need if your child has been identified as at-risk for wandering.

2) One-on-one adult supervision at school

Insist on your school providing an individual to watch your child exclusively and creating a behavior plan to address his wandering behaviors. Download this SAMPLE IEP LETTER drafted by The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration to use as a reference.

3) Secure your home

autism and wanderingMake sure windows have locks and alarms on them. If a central alarm system is beyond your budget, less expensive alarm devices are available online and at electronic stores.

If your child cannot reach the tops of doors and is not able to get a chair to reach, install deadbolts on the doors to prevent him from leaving your home on his own. If he can reach, you may wish to use locks that require keys, but BE CERTAIN THAT THERE ARE MULTIPLE KEYS HIDDEN THAT EVERYONE ELSE IN YOUR HOME CAN EASILY ACCESS in the event of an emergency like a fire. Long ago, we used keyed locks but switched over to combination locks shortly after, as we were concerned that keys could too easily be misplaced which could leave family members vulnerable to the risk of being trapped in the house during a fire or other emergency.

autism and wanderingWhile they may be a decorator's nightmare, commercial push-button locks on every exterior door of our house have given our family tremendous peace of mind over the years. We just have to remember to shield our hands when entering the exit code as Michael can be pretty good with numbers. Again, for the safety of others, ensure that EVERYONE ELSE KNOWS THE EXIT COMBINATION in case of emergency.

4) Clear communication

We have had two mishaps over Michael's 18 years in which he has wandered away from us, and both times can be attributed to miscommunication. The first time it happened a mall. My husband said "You've got Michael" but I heard it is as "I've got Michael" and we both walked away, leaving our five-year old alone for more than ten minutes in one of the largest malls in North America. The second time was on a beach when there was some confusion about which family member was actually watching him. It turned out no one was and fifteen minutes later, we found him wading in the Gulf of Mexico about half a mile down a busy Florida beach. This was a tough and terrifying lesson for all of us but thankfully this story had a happy ending. I can't emphasize how important it is to communicate clearly about who is "on duty". It can be a life-saver.

5) Harnesses

autism and wanderingWe've used them and I've gotten stares and comments. I don't care. In a crowded theme park, the peace of mind a harness provides is invaluable. (As Michael got bigger we were unable to find one that fit him so we had one custom made.)

6) Teach routines

Michael has been taught to stop whenever he approaches a curb or gets out of a car and in his best approximation, says, "Stop, is it safe?" He knows not to proceed any further unless the adult with him says, "Yes, it's safe." You may wish to try these routine - or a customized variation of them if your child is non-verbal, as an added safety precaution.

7) Be aware of local dangers & places your child likes

autism and wanderingMake a point of knowing all of the nearby bodies of water and places your child likes to go. When Michael got away from us in a mall once, we took off in opposite directions and my husband headed for the pile of stuffed toys at the back of the Disney Store that Michael loved so much. Thankfully, he found him there, happily arranging all of the plush toys. Have these places listed and bodies of water highlighted on a map and include them in your Autism Emergency Form.

8) Alarms and alerts

autism and wanderingElectronic devices that sound an alert when your child leaves a preset area can be helpful, but of course, never a substitute for personal supervision. We have a video monitor that works in conjunction with our iPhones. Not only does it enable us to watch and listen to Michael when he is in his bedroom, but it can also sound an alert when he gets out of bed with its motion-sensor capabilities.

9) Autism service dogs

autism and wanderingService dogs can be trained to try and prevent a person with Autism from wandering and to notify others if the person has left the dog's presence. Explains one Autism Mom I know, "Going out to malls, stores and public places is much easier now because I am not constantly worried about where my son is." She recalls how much better she now sleeps, as her son now wants to stay in his room because that is where his dog is. "I actually have to get him out of bed in the mornings now, which did not happen before. It means that I can now get a restful sleep and not worry about his safety." This mom has had her share of wandering scares, recalling one time when her son left their house in the middle of winter, on his own, to go look at Christmas lights.

TO BE PREPARED, SHOULD THEY WANDER OFF:

10) Take action immediately

autism and wanderingIf your child is missing, don't wait and try to find him yourself first. Time is too precious. Call 911 immediately and start getting a team of searchers into action. Every second counts.

11) Autism Emergency Form

Create an Autism Emergency Form which includes:

  • Recent realistic photos of your child (If your child does not smile very often, do not include a photo with a coaxed smile)
  • Full name of your child, as well as names he or she will respond to (or not respond to)
  • Written physical description including height, weight, eye and hair color, any identifying marks or characteristics such as unusual hand movements or gait
  • Names, as well as all home, work, and mobile numbers of parents and other caregivers, as well as that of the primary physician familiar with child's autism
  • Prioritized list of emergency contact persons if parents are not reachable
  • Sensory issues, especially hot buttons. What happens if touched
  • Medical or dietary issues, including medications and allergies
  • Previous elopement behaviors and destinations if any
  • Favorite attractions where the child may likely go
  • Best ways to approach the child and ways to de-escalate panic and tantrums
  • Ways to communicate. Be specific. If nonverbal, does the child respond to sign language, written words, or pictures? Include relevant pictures or signs that may help calm the child
  • Mention any ID bracelet, shoe tags, or printout card the child may be carrying
  • Details about tracking devices if they are in play
  • Any dangers that the child might present to him or herself or others such as setting fires, biting, or compulsive eating of nonfood items

(Emergency List courtesy of Butterfly Effects)

Be sure to update this list often and keep a PDF version of it on your computer and smartphone if you have one, so it can quickly and easily be circulated wherever you are and whenever you need it.

12) Educate your neighbors

autism and wanderingWrite a letter about your son and circulate it in your neighborhood, along with a copy of your Autism Emergency Form.

Lobby your city to have an Autism Alert Sign put up in your neighborhood, like this mom did.

13) Educate & inform police

autism and wanderingRegister your child with the local police department. If they don't have a registry for people with Autism or those at risk of wandering, encourage them to start one.

14) Identification

Make sure your child's identity is always on him, using strategies like:

autism and wandering

 

 

 

 

 

  • ID bracelets and necklaces
  • Shoe and clothing tags (realizing that if your child has a tendency to shed his clothes these will not be effective)

15) Enhance visibility

autism and wanderingDress your child in bright clothes, especially if you are going to be in a busy place. I always look for brightly colored swimsuits for Michael to make him more visible when we are at the beach.

16) Take a picture of your child every time he goes out

autism and wanderingDoes your phone have a camera? If so, snap a quick picture of your child so that in the event that he goes missing, you'll know exactly what he was wearing on that day and will be able to share a current image with searchers immediately.

17) Practice "being lost"

If your child has the skillset and cognitive ability to understand, teach him what to do in the event that he should become separated from you or his caregiver with the use of strategies including:

  • Social stories
  • Pretending to be lost in various locations
  • Scripts that you teach him, like reciting his name and phone number if he is verbal

18) Teach your child how to swim

autism and wanderingStatistics tell us that people with Autism are at a significantly greater risk of drowning than the general population. Teaching autistic people to swim can protect them from these odds. Many YMCAs offer swimming lessons especially for people with special needs. Enroll your child and reduce the risk.

19) Familiarize and equip yourself with helpful resources and items that address wandering and Autism, including:

 

 

20) Tracking devices

autism and wandering

 

 

 

 

 

There is a growing number of GPS-integrated devices on the market that can help locate a person who has wandered off. Hopefully, with further technological advances, these devices will become smaller, less expensive and more accessible to all individuals on the Autism Spectrum.

Thanks to AWAARE CollaborationButterfly Effects.comTeresa Camille Kolu, Board Certified Behavior Analyst at Cusp EmergenceLucile Hooton Lynch, Co-Owner and CEO of Steps4Kids, The National Autism Association and others mentioned above for their contributions to this blog.

 

 

June 1, 2013   Comments (2)

How To's Safety Wandering & Bolting

moyra said on June 27, 2013

What a wonderful article.  So practical.  My child was a wanderer when younger and I have similar experiences of shopping malls, hopping out of car windows before you realise all thank goodness with happy endings.  We have an organisation in south africa Medicalert.  You register a a member and can have personalised bracelets made with your membership number and the type of health or disability problem.  My son did not know his name so we made it simply.  Speech disorder, My name is Jo.  The telephone number of the organisation is on the disc they can immediately be contacted and will give the necessary details.  Thank you for the advice which I will pass on to other parents of wanderers.  Moyra

Ann Kilter said on July 26, 2013

This is a great article. I had my son in a harness and my daughter in wrist leash (that’s what it looked like). My son was a runner. My daughter was a wanderer. And the baby was in a stroller. We sure got a lot of strange looks. One day I was sitting in a car in a grocery parking lot, and I realized suddenly that there were three year old children following their parents. Following. Only my youngest (four at the time) followed me. Her seven year old brother and nine year old sister did not.

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