Elopement and Neighborhood Safety

As the end of the school year approaches and students are let out on vacation, it’s important for us to consider the risks of elopement and overall neighborhood safety for children with autism. This month, we’re sharing a special feature from ASAT written by Kate Britton, EdD, BCBA and Bridget Taylor, PsyD, BCBA from Alpine Learning Group in New Jersey. Here, Kate and Bridget offer their guidelines on preventing potentially harmful situations and ensuring the safety of your children. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Elopement and Neighborhood Safety
Bridget Taylor, PsyD, BCBA and Kate Britton, EdD, BCBA
Alpine Learning Group, NJ

Elopement and neighborhood safety

Photo credit: AWAARE

You are not alone. In fact, according to an online survey conducted by the National Autism Association in 2007, 92% of the parents indicated their child with autism was at risk of wandering away from his or her home or care provider. More recently, Kiely et. al. (2016) reported survey results of families of children with Autism Spectrum Disorders which found that 49% of those children had made an attempt to elope since the age of four. Additionally, 62% of parents of children who elope reported that this behavior prevents them from participating in activities away from home. Children with autism are especially vulnerable if they wander away from caregivers, as they may not be able to communicate that they are lost, take steps to ensure their safety such as identifying who in the community is safe vs. unsafe, asking for assistance, or stating important information such as their phone number. We hope the following guidelines can help you in preventing potentially harmful situations.

Develop a “safety / reaction plan”. Develop a family safety plan and practice that plan. In the event of your child wandering, time is most important and a quick, efficient response can make a difference. For example:

  • Which family member will call the local police?
  • Which family member(s) will go out looking and where (e.g., the route to the child’s favorite park)?
  • Which family member will call neighbors of homes with pools?
  • Which family member will stay by the phone in case the child is found and returned home or to receive updates?

You can find a sample plan at the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration website (www.awaare.com). It would also be important for your child’s school or treatment center to implement an emergency plan for elopement.

Secure your home and yard. Secure your home and yard area so that your child is less likely to wander away. Sometimes standard locks are not enough as many children quickly learn how to operate standard locks on doors, windows and gates. Install locks on doors and gates in the yard that your child cannot open (consider location height and lock complexity). In addition, if your home has an alarm system, keep it set to go off whenever a door or window has been opened. If your home does not have an alarm, install an alarm system that signals when a door or window is opened. There are a variety of systems available, including high-tech and low-tech options. You may consider contacting a medical or educational provider, who can help identify resources to help obtain funding for such systems/equipment. Here are some suggested websites:

Install monitoring systems. Additionally, be sure to regularly monitor your child around the house by using a video monitoring system or a baby monitor that has video monitoring capability, such as:

Make the yard and pool area safe! If you have a pool or there is a pool nearby, ensure there is a locked fence surrounding the pool. You can also purchase a pool alarm for yours and/or your neighbors’ pools (e.g., www.poolguard.com). If your child goes into pools unsupervised, you can also use the Safety Turtle (www.safetyturtle.com), which is a wristband that locks securely around your child’s wrist and sounds an alarm if it becomes immersed in water.

Inform law enforcement. It is also critical to inform your police and fire departments that an individual with autism resides in your home. You can do this by calling your local non-emergency telephone number and asking personnel to note in the 911 database that someone with autism lives at your address. If there is ever an emergency, the emergency responders will know in advance that they need to respond accordingly. We also recommend giving local police and fire departments a picture of your child with your contact information on the back which can be helpful in identifying your child if s/he is ever brought to the station by someone else. Another suggestion would be to register with the National Child Identification Program (www.childidprogram.com). The program provides a kit that includes information on everything law enforcement would need in case of an emergency.

Educate neighbors. Another tip is to make sure your trusted neighbors are aware of your situation. Give them a picture along with some helpful information about your child (e.g., s/he is unable to speak, s/he responds to simple commands, s/he likes to swim so please keep your pool gate locked) and about autism in general. Also include your cell phone and home phone numbers, and ask them to call immediately in the event they ever see your child wandering away from the house or walking the street unaccompanied by an adult. Also, assess your child’s current level of communication. For example, can s/he answer social questions and be understood by novel listeners? Strangers will be most likely to ask your child, “What’s your name?” So it is important that your child can be understood by listeners who don’t know your child. If your child will not be understood or can’t relay enough information, you could use medical identification jewelry, such as a bracelet (e.g., www.medicalert.org).

Safety on vacations. Once your home is secure, vacations may still seem unrealistic. However, there are some steps you can take to allow your family to safely stay in a hotel or space other than the safe haven you have created. When planning for a vacation, really think about your vacation destination and determine the potential risks for your child with autism. Specifically, if your child has a history of wandering (especially towards pools or other swimming areas) you may want to ask for a room furthest from the pool area or without an ocean view-or maybe even choose a location that does not have a pool. When checking into the location, inform the hotel staff about your child and advise them that s/he will require supervision at all times and if they see him/her unsupervised to call you immediately. Also, consider using portable door alarms for hotel rooms, a child-locator systems and/or a global positioning systems (GPS). You can find low-tech tracking devices and high-tech devices online.

Teach skills to increase safety. Lastly, it’s essential to proactively teach your child skills that will increase his/her safety. Work with your child’s school or treatment program to include the important safety goals in your child’s individualized education plan (IEP) such as:

  • responding to “stop”
  • answering questions to provide information
  • responding to name
  • holding hands
  • requesting permission to leave the house
  • requesting preferred items/activities
  • waiting appropriately
  • using a cell phone
  • crossing the street safely (if appropriate given age and level of functioning)
  • seeking assistance when lost
  • cooperating with wearing identification jewelry
  • identifying outdoor boundaries (i.e., not leaving the front lawn)
  • learning clear rules about outdoor play (getting a parent if a stranger approaches, asking for help if ball goes into street)
  • swimming more proficiently
  • learning rules about pool use

Check out www.awaare.org for sample letters to submit to your case manager and attach to your child’s IEP. Finally, it cannot be overstated that children with autism require very close supervision when in harm’s way. We hope you find these proactive and teaching suggestions helpful in minimizing your child’s risk.

Additional toolkits and resources

References

Anderson, C., Law, J.K., Daniels, A., Rice, C., Mandell, D. Hagopian, L. & Law, P. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 870-877.

Kiely, B., Migdal, T. R., Vettam, S., Adesman, A. (2016). Prevalence and correlates of elopement in a nationally representative sample of children with developmental disabilities in the United States. PLoS ONE 11(2): e0148337, doi:101371/journal. Pone.0148337

About the Authors

Dr. Bridget A. Taylor, PsyD, BCBA is Co-founder and Executive Director of Alpine Learning Group and is Senior Clinical Advisor for Rethink. Dr. Taylor has specialized in the education and treatment of children with autism for the past twenty-five years. She holds a Doctorate of Psychology from Rutgers University, and received her Master’s degree in Early Childhood Special Education from Columbia University. She is a Board Certified Behavior Analyst and a Licensed Psychologist. She is an Associate Editor for the Journal of Applied Behavior Analysis and serves on the editorial board of Behavioral Interventions. She is a member of the Behavior Analyst Certification Board and serves on the Autism Advisory Group for the Cambridge Center for Behavioral Studies. Dr. Taylor also serves on the Scientific and Community Advisory Board for SPARK a new program at the Simon’s Foundation Autism Research Initiative. Dr. Taylor is active in the autism research community and has published numerous articles and book chapters on effective interventions for autism. She is a national and international presenter and serves in an advisory capacity for autism education and treatment programs both locally and abroad. She has been influential in the development of autism treatment centers both locally and in Italy, India, Canada, France, Australia and Kosovo. Dr. Taylor’s current research interests are in identifying innovative procedures to increase the observational learning repertoires of children with autism.

Kate E. Cerino Britton, EdD, BCBA is a Board Certified Behavior Analyst and a certified teacher of the handicapped, and has worked with individuals with autism since 1997. She is currently the Principal of the education program at Alpine Learning Group. She holds a Masters in Education Administration from Caldwell College and Special Education from Long Island University and a doctoral degree in Educational Leadership, Management, and Policy from Seton Hall University. She serves on the New Jersey Association for Behavior Analysis Board of Directors as the Secretary and Continuing Education Chair and has presented at national and international conferences on increasing socializing, problem solving, small groups and dyad instruction, promoting safety, and augmentative communication.

NEW Product Spotlight: Independence Day GPS-Enabled Clothing for Kids with Autism

This week, we’re thrilled to introduce you to a one-of-kind clothing line developed by autism mom Lauren Thierry. These unique shirts improve the quality of life, self-esteem, safety, and independent dressing skills of children and teens with special needs. Inspired by preppy American fashion brands, these stylish shirts come with a discrete GPS tracker embedded in the seam enabling you to locate your child at any time. Each pullover features stretch Lycra panels instead of buttons, zippers or laces, and no scratchy tags at the waist and neck, optimizing the shirt for comfort. Best of all, each shirt is double-faced so it can be worn backwards or inside-out and still be on the “right way”!

This week, we’re offering two of Independence Day’s stylish shirts at a 15% discount. We think these shirts offer quite a bit, helping individuals dress themselves appropriately while providing the comfort of knowing that you can locate your child if they should ever wander.

We’re also excited to introduce you to Independence Day founder and autism mom, Lauren Thierry. She’s written an excellent article just for us on her experiences with her son, Liam and how she came up with this ingenious idea. We hope you enjoy!

As Most Autism Moms Know, Revolutions are Relative
by Lauren Thierry

I have just been feted at lovely party in a lovely suburban hotel, where the emcee called my clothing line, Independence Day, “Revolutionary!”

As a former media person, I’m used to hyperbole. I know they have to have a hook, an angle. But I admit this made me blush and, well, made the journalist in me pine for “accuracy.” What I did was not revolutionary. It was simply something that had to be done. Like the moms in the 1960’s who safety pinned mittens to their kids coats before there were mitten clips. The moms did it because those “kittens” might lose their “mittens.” Revolutionary? No, just “mom sense.”
So when I figured out a way to “fashionably” GPS-dress Liam, my son with autism, it was pretty much “the mitten thing.” To the tenth power. No longer are moms talking about frozen fingers. They are talking about saving lives. Finding the one who wanders.

I took a mainstream rugby shirt and tweaked it just a bit, so that my son with autism could wear it easily, and softly folded a GPS into the fabric. That wasn’t a revolution. It was however, the start of a 14-piece clothing collection for those with disabilities. And it did start a “thought revolution.” That maybe those with cognitive impairments, or physical handicaps, could – and should – get dressed independently and look just like everyone else. And be safe and accounted for. So I cringe when I’m called a “designer.” I’m not even a fashionista.

ID Clothing Comparison

So why would someone like me start a “trendy/preppy” clothing line? Why would I carve out a niche in the preppy apparel space already dominated by Gap, JCrew, Abercrombie, Lacoste, Lilly, and Ralph?

Because that’s the stuff I wear, my typical 12-year-old twins wear. But my son with autism – and some 12 million other tweens/teens/young adults – cannot wear. Because tags, buttons, zippers – even collars – make those rugby shirts, cargo pants, and pretty pastel dresses impractical, uncomfortable, inaccessible and sensory-averse to those in that disabilities demographic.

ID Clothing Lauren MomBecause I’m an autism mom. That makes me a warrior mom. An activist mom. Someone who sees a lot of families, like mine, just trying to get through the day with a kid who can’t dress himself, except in baggy sweats and mono-color T-shirts. Even then, my Liam runs a 50% chance of getting those clothes on backwards. Or inside out. Or some other way that embarrasses his siblings and starts our day off under a cloud.

I’m not re-inventing the preppy apparel wheel here. I’ve just made some ingenious (patent pending) tweaks to these classic clothing lines, so that this population can have the opportunity of looking like any other kid going off to Greenwich High School, and the dignity of putting those clothes on independently – without Mom’s help for 30 minutes every morning.

I’m not just some suburban mom with a half-baked “really cool idea.” I’m a Columbia grad with a 20-year career behind me as a Financial TV news anchor. I’ve worked for small TV stations around the country as well as for Los Angeles and New York outfits from ABC/Disney to Time Warner. I’ve learned how to “think small” and “think big.”

ID Clothing Lauren CNNI quit my job as a CNN Financial news anchor to take care of my son and advocate for autism causes. I shot a documentary, “Autism Every Day,” which premiered at Sundance. Shooting that doc, I spent 24 hours in the homes of 8 “autism families.” I saw that, like my son, these kids learned by “rote” the fundamentals of dressing. But due to simple design obstacles like “fronts and backs,” there was a wide margin for error. That was my first “focus group” on the dressing issue, all down on film.

I shot footage of stressed-out, exhausted parents who’d given up trying to dress their special needs children fashionably, just putting their kids on school buses in pajamas.

I shot footage of siblings of these kids, embarrassed to be seen next to their minimally-dressed brother or sister. Their experiences reflected my own.

I’ve seen where my son Liam and millions of others with special needs are forced to adapt to a world that is simply not adapting to them, in some of the simplest of ways. Like getting dressed.

I’ll leave finding a cure for autism to the scientists. But I can put out a clothing line that’ll get these kids up and into clothes just as beautiful and classic as the major designers…and out the door in 3 minutes. On their own, independently. Mom won’t be here forever, you know.

Getting dressed – on trend, and on time – every morning. Now that’s Independence.


 

ABOUT THE AUTHOR

Lauren Thierry HeadshotLauren Thierry is the founder of Independence Day/ID, a technology and fashion convergence designed to address a myriad of safety and dressing issues for the special needs population. A graduate of Sarah Lawrence College and the Columbia University Graduate School of Journalism, Thierry was a TV Anchor in local, national and business news for more than a decade before she left her job at CNN Financial News to care for her autistic son, Liam. She became a driving force behind numerous autism education initiatives. Among them, she created the fundraiser known as Autism Awareness Day at Shea – then at Citi Field – for which the New York Mets to devote one game a year to autism education. She brought in strategic partners Hess Oil, Prudential Elliman, Bear Stearns, Royal Bank of Scotland, BNY Mellon, and various hedge funds to the effort.

Thierry produced the documentary, “Autism Every Day,” described as “The shot heard ‘round the world for autism,” when it debuted at the Sundance Film Festival. Shooting the film, she saw that wandering/elopement were major issues for autism families. She also noted that the simple act of getting dressed for these families was a grueling obstacle course of “fronts and backs,” “insides and outs,” zippers, buttons and tags. That was Thierry’s first “focus group,” all down on film. Independence Day/ID Clothing was started to address those issues.

Independence Day/ID is an American Express Passion Project winner for 2013.

Guest Article: “Wandering and Autism” by Sarah Kupferschmidt, MA, BCBA

There are compelling statistics today that highlight the need to address the issue of our children wandering and going missing.  The safety of chidren with autism is an enormous concern for parents and caregivers alike.  Last month, we shared BCBA Sam Blanco’s interview with Gary Weitzen on safety, wandering, and emergency planning for individuals on the spectrum.  This week, we’re thrilled to bring you a guest article by Sarah Kupferschmidt, MA, BCBA. Sarah has written a wonderfully informative article on how to use the Behavior Skills Training framework to teach your child help-seeking behavior in cases of wandering.
Wandering and Autism
by Sarah Kupferschmidt, MA, BCBA

We seem to be hearing about more and more cases of children with autism wandering and going missing in the media.  In some of these cases the children were reunited safely with their families, but in many unfortunate instances, tragedy ensued.  There is evidence to suggest that this may be more common than most people realize.   The Interactive Autism Network (IAN) and the Kennedy Krieger Institute published a study in 2012, in the Journal of Pediatricson this very topic.  According to the study,  49% of the parents that were interviewed reported that their child with autism had wandered or bolted.  Moreover, more than half of those children that did wander actually went missing.  Compelling numbers aside, what I found even more important about the results of this study was that for obvious reasons parents reported that they were experiencing high levels of stress related to the prospect of their child wandering, but, they were also feeling helpless to a certain extent because they felt that they did not know what they could do about the wandering.

The good news in all of this is that there is hope for those families.  There are ways that we may be able to help prevent children with autism from going missing in the event that they do wander. Behavioral Skills Training (BST), which is a framework based on Applied Behavior Analysis, has been shown to be effective in teaching a variety of different skills to individuals with and/or without a disability.  Specifically, it has been shown to be effective in teaching help-seeking behavior in children with autism (Bergstrom, R., Najdowski, A.C., Tarbox, J., 2012).   This framework involves breaking a complex skill like “seeking help when lost” into its component parts and teaching the child to engage in those behaviors when relevant. For example,   in the article mentioned above, children with autism were taught what to do if they were lost in a store. The help-seeking behavior was broken down into the following steps:
  1. Shout out for the person you are with (e.g., “Mom” or “Dad”)
  2. Look for and walk over to store employee
  3. Tell the employee, “I’m lost”
These steps were taught using the BST framework which includes the following critical elements:
  1. Instructions: Explaining to the child what they should do
  2. Modeling:  Showing the child what they should do
  3. Rehearsal: Practicing with the child
  4. Feedback: Providing feedback to the child on how they did

Each of these steps are fairly self-explanatory.  The instructions step is simply telling the child in words what they should do.  Perhaps you could include some visuals when you are reviewing the steps of what they should do when they get lost.  The next step is showing them how it should be done.  I typically use video models but it is possible to demonstrate it live if you don’t have a recording device.  The next steps are critical in the development of this new skill.  Set up a safe situation with the child where you can go out in the community and practice the three steps.  You could bring the visuals along with you if your child needed that little bit of extra help.  If your child did all three steps correctly it is important to praise them immediately and to let them know what they did well.  If they missed one or more of the steps let them know what they did well and remind them of what they need to do differently next time.  For example, you might say “nice job shouting out for mom or dad, next time, don’t forget to tell the cashier you are lost”.  These steps would be practiced until your child was able to do it fluently.

While the BST framework has evidence to support its use, it is important to remember that every child is unique and has different strengths and weaknesses.  In my experience, the children that would do well in this type of program have certain pre-requisite skills.  Ideally, they would already be able to follow simple instructions, have the ability to imitate, and the ability to identify strangers and familiar people.  While children with autism may be at higher risk for wandering, there are things that we can teach parents/teachers to do to help reduce the risk for compromised safety and/or harm that are grounded in ABA.  If you are worried about your child’s risk for wandering, then I would recommend you contact a local Board Certified Behavior Analyst (BCBA) that can assist you in determining if a program such as the one described above would be suitable for you and your child.

About the Author

Sarah Kupferschmidt is a Board Certified Behavior Analyst (BCBA) who has worked with hundreds of children with autism and their families across Ontario. She has had the privilege of supervising ABA programs and training clinical staff in those programs.  Currently Sarah offers parent coaching and workshops to teach parents but also educators on the most effective ways to teach children using the principles of ABA.  She is also a part-time faculty member at Mohawk College in the Autism Behavioral Science program, in the social sciences program at McMaster University, and an Adjunct Professor at Sage Graduate School.  Sarah is CEO and co-Founder of Special Appucations Inc., which is a company that creates educational products that help maximize the learning potential for children with autism because they are designed using the principles of ABA.  Sarah has appeared as a guest on CP24, CHCH news, Hamilton Life and the Scott Thompson radio show as an authority on autism.