Managing Wandering for People With Autism
Written by Irene van der Zande, Kidpower Founder and Executive Director
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The following article provides suggestions for parents from both Kidpower and Autism Speaks about how to protect their children with autism who are prone to wander or to suddenly put themselves in harm’s way. Most parents can empathize with the rush of terror that one feels for any threat to their child’s safety. This anxiety is compounded many times over when you have a child with autism.
As one worried mother said, “My son is a persistent escape artist. Once he had opened the window and was getting ready to jump out from the second story of our home. His father caught him mid-air in the nick of time. He runs head-on towards streets, and he is so fast!”
The overwhelming fear when your child disappears or abruptly becomes dangerously out of your reach can be heart-stopping. We see the potential hazards, but often people with autism and young children don’t see the world the same way we do. And our priorities are different. Their safety and well-being are the most important things in our lives. Unless they have learned differently, acting on their impulses is usually what is most important to them in the moment.
For their safety and our peace of mind, understanding the causes of wandering, making safety plans, and teaching skills can be a tremendous help in managing wandering for people with autism.
Findings from the Wandering Study
The Wandering Study conducted by researchers for Autism Speaks provides important analysis and documentation of the issues caused by wandering for families with autism.
The study found that the belief that children with autism wander off because of inattentive parenting is a myth. Siblings of kids with autism were found to be far less likely to wander after the age of four. Also wandering was found to increase with autism severity and to happen from many different places. Children with autism wandered from their own homes, homes they were visiting, school, and stores.
Motivations for wandering were found to include:
- heading to a favorite place
- the joy of running or exploring,
- seeing something interesting,
- escaping an anxious situation,
- getting away from uncomfortable sensory stimuli, or
- pursuing a special interest.
Finally, the study documented the tremendous anxiety caused by wandering. Over half the parents (56%) reported that this was their child’s most stressful behavior, and yet half the parents said that they had received no training or guidance about how to address this problem.
Knowing what to do is important because wandering increases risks to a child of being hit by a car, drowning, or being harmed by a person.
Teaching Safety Rules and Skills to Help Prevent Wandering
People with autism tend to think in concrete, literal terms. Consistent definitions and ongoing practice of concrete, specific safety rules and skills can help them to develop an understanding about how we want them to act in different situations.
“See the boundary”, “Wait”, “Check First”, “Stop”, “Turn around”, and “Stay Together” are concepts and skills that can help to prevent wandering. You can help your child to develop safety habits for using these skills by:
- Defining physical boundaries and the rules that go with these boundaries concretely and consistently such as the door, the room, the house, the sidewalk, the driveway, the yard, and the street.
- Teaching safety skills as soon as possible.
- Practicing and rehearsing the skills and reinforcing the boundaries by role-playing common problems.
- Reviewing the plan using the skills before you go anywhere.
- Providing constant reminders of when to use these skills with rewards for doing so.
For those who relate to books or stories, we recommend creating personal books with a social story. These can be as simple as four pieces of paper stapled together with stick figure drawings with one sentence on each page following this plot:
- A neutral statement of the situation – “Darla likes to run down the sidewalk.”
- The problem – “Darla’s mom gets worried and upset.”
- The solution -“Darla will Check First before she runs – and Wait at the corner.”
- The happy ending – “Everyone is safe and has fun.”
One common problem is that family members, teachers, and professionals will often use highly varying words and ideas to explain about safety, which can be confusing for anyone who is learning something new or changing unsafe habits, especially someone with autism or other literal thinkers.
Our Kidpower Safety Signs were originally created as a tool for showing core safety concepts in a very simple form so that everyone who is responsible for the safety of a person with autism can work together to help this individual develop understanding and skills more effectively. They are so memorable that many of our Safety Signs are now being used in all our programs both for the general public and for people with special needs. These Safety Signs create a common language that makes it easy and fun for everyone, everywhere, to use the same words, gestures, and ideas about staying safe with people.
Whether you use our Safety Signs or other symbols or gestures that work for your family, school, or organization, Kidpower’s four keys to teaching safety skills are Simplicity, Consistency, Repetition, and Relevance. This means:
- Make it simple – because simple things are easier to remember.
- Be consistent – because consistent messages make more sense.
- Repeat the rules and practices a lot– because successful behavior makes understanding and skills stronger and turns them into habits.
- Make it relevant – because people learn a skill faster when it seems useful and familiar.
As one parent wrote, “With our son, we go over the rules every day. Now it’s to a point where he’s saying the rules back to us. When we go out, he’s right by my side at all times.”
Learning How to “Wait”
Remembering to “Wait” can keep your child from leaving a place unexpectedly.
To teach how to “Wait”, you can use any concrete symbol that makes where your child needs to “wait” very clear, including:
- Red tape across doors or floors.
- A big red Wait or Stop Sign by the door.
- Making a “No Circle” – a circle with a diagonal line through it – for anywhere that it is not okay to go without holding a known adult’s hand –the front door, the classroom door, the back yard gate, etc.
By understanding your own child, you can create strategies that work because they are relevant and used consistently.
- “My son LOVES duct tape. We finally realized that he treats red duct tape like a stop sign. So, we put tape lines on the sidewalk and he won’t cross them.”
- “From home? We kept his shoes where he couldn’t get to them, because he wouldn’t leave without them.”
- “I look at things from my child’s sneakiest perspective.”
- “We use the term ‘safe spot’. That meant waiting on the front porch to start (when we were leaving the house). Then it became anywhere we were…so when at the grocery ‘safe spot’ was the grocery cart…’Hand on the safe spot’ or if we went to the water park ‘The blue steps are the safe spot’”.
Extra locks and alarms are also sometimes necessary to ensure that a child with autism does not go outside so parents can get some sleep or relax:
- “We installed double-bolt locks on all exterior doors.”
- “Chain locks up high and out of reach.”
- “Alarms on the doors and windows of our house.”
Learning How To “Stay Together”
When a child knows to “Stay Together” with you, getting separated through wandering becomes far less likely. To teach how to “Stay Together” when you go out, you can:
- Make a plan that you are going to “Stay Together” before you leave and review each time before you go out.
- Play games where you move in different directions and your child sticks to your side like glue.
- Teach the Kidpower Safety Sign for “Stay Together” or create your own sign and practice using with examples of places where temptations might be likely such as the mall or Farmer’s Market.
- Practice calling the child’s name and having her or him answer, “I am here.”
- Practice calling, “Come here, _____” and have the child come to you immediately to get a small reward.
- Play games like “Red Light/Green Light” using the words, “Stop. Walk. Run” instead, getting rewards for following the commands.
Other “Stay Together” solutions parents have found include:
- “During any nighttime event, I hang a glow stick around his neck so I can see him and hang one around my neck too so that he can see me too.”
- “I put him on a leash in a store, never mind the dirty looks.”
- “Our OT worked on defining boundaries: room, house, yard, block, neighborhood, etc. We worked a lot on when to ‘stop’ and ‘turn around’ as my son stimmed on running down sidewalks in only one direction.”
Learning How to “Check First” Before Changing the Plan
When we go out in the world, especially as children become more independent, keeping track of them can be challenging. Kids are safest if we know where they are, who is with them, and what they are doing. Learning to follow the Kidpower safety rule of “Check First Before You Change Your Plan” can help to prevent wandering or other unsafe behavior but often leads to disappointment. Be sure to reward your child each time she or he Checks First with you.
To teach how to “Check First”, you can:
- Teach the Kidpower Safety Sign for “Check First” or create your own sign and practice using with role-plays of common temptations, such as seeing a puppy or a favorite game.
- Give lots of relevant examples using pictures or actual situations or stories of when to Check First – someone you don’t know calls your name, you see a funny puppet,
- Make signs by the door with reminders and drawings: “STOP! Did you ask to go outside?”
Figuring out how to balance your child’s independence with safety often requires step-by-step solutions that depend on your child’s abilities, ages, and skills.
- “Gotta start young. From the beginning I have taught my girl to stay right by me at all times. I also walk away from her in the store to see how she reacts. She always looks for me and stays where she’s at because she knows I’ll come right back.”
- “We made simple maps for our son and brought him around the neighborhood to show him where he could go. We also bought a set of good walkie talkies and taught him to press the button and talk. Next he got a bike and the boundaries were expanded still checking in on the walkie talkies. Now he has a cell. We encourage him to text us a picture so we can see where he is but mostly he stays within 5 blocks.”
The article A Five Step Plan For Preparing Your Child for More Independence describes a realistic process for deciding when to let your child go somewhere without adult protection.
When a Child Wanders: Getting Help And Getting Found
If a child does wander off, we want this child to get help and be found as quickly as possible, before any problems occur.
Sometimes electronic solutions are the best answer:
- “I take a pic on my phone of her every day in her outfit and every night as soon as she puts her pjs on. If she is lost outside of the house, it will be the best resource for those helping to search.”
- “We use a GPS tracker. It’s small enough to attach to a belt loop and gives us real time updates on our phones. It gives me big peace of mind that I can find him if he does wander.”
- “Project Lifesaver. As a fireman/paramedic that has had to respond on numerous urban searches, both with and without the equipment, it is hands down the best. As long as Indianapolis has had it, we have ALWAYS been able to find the wanderer.”
- “There is a GPS device sold at radio shack and other electronic retailers that can be sewn into clothing or otherwise attached to your child. You can then set a boundary, for example, the inside of your home or your yard. If your child wanders out of the boundary, you will receive a text message alerting you to his/her whereabouts.”
For families where this works, a dog can be a useful member of the protection team surrounding your child.
- “We broke down and bought a German shepherd and trained him to locate our son anytime he wandered off. It took several games of hide and seek, but 4 years later our furry puppy still likes to play hide and seek with our son. We usually have him found within minutes.”
- “We got my son a service dog and it was the best decision we ever made.”
Enlisting help from the community by giving information is also important.
- “When we moved to a new neighborhood the first thing we did was go door to door with a flyer with a picture of our guy and our number on it. The message we put out was “if you see this boy unaccompanied please contact us as soon as possible”. The response from our new neighbors was good, most were interested in knowing more about autism and happy to help if they could. We were very lucky to have such wonderful neighbors.
- “I am working on a special flyer (as recommended by autism orgs I have researched) which I will keep in his backpack and will share it with the police & fire departments so they are aware of his behaviors, capabilities and challenges…in case he wanders away.”
- “My son wears a charm bracelet on his ankle for summer with my cell & his med on the other side. I also had puzzle piece key chains engraved with the same. One is hooked to his back pack & one goes on his coat.”
The most effective plans often require a variety of steps. As one parent wrote, “My little one wandered once and scared the hell out of me. So, I ordered the Big Red Safety Box from the National Autism Association. Also, installed locks on the tops of the doors, put his name in his undies, did the smart phone decals on his shirts, put an ID inside his helmet, notified all my neighbors, and held a meet and greet with the local Fire Department and Police Department so they know my son and the risk of living with autism now!”
Finally, children who can understand that they are lost can learn what to do to get help. This article describes how to make a safety plan and practice skills: “What If I get Lost?”
Managing Your Own Feelings
It’s normal for most parents to worry about their kids – and especially likely if you have a child with autism or other special needs – and even more likely if your child has a tendency to wander.
Anxiety and worry only make you miserable without making your child safer. Instead of worrying, give yourself the gift of peace of mind. Use these ideas and find your own solutions so you can:
- Take reasonable actions to prevent wandering.
- Teach your child what to do and not do as much as possible.
- Enlist the help of others in protecting your child.
And then take care of yourself. Try to be safe in your imagination by reminding yourself of the steps you have taken.
There are no guarantees. Sometimes no matter what you do, your child might wander off or get hurt. This does not mean you are a bad parent – it just means that you had some bad luck.
Be kind to yourself – and get emotional support from family, friends, and wonderful organizations like Autism Speaks.
Remember that your child will be safe most of the time because of your preparation, protection, and love.