By: Cara Long, Parent Liaison
For years I have worried about my daughter, who is non-verbal and has Down syndrome, wandering from our home – and I know that I am not alone! A 2011 study conducted by the Interactive Autism Network found that nearly half (or 49% of children with autism) attempted to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. In addition, wandering is ranked among the most stressful behaviors by parents of children with autism who wander. 
Thankfully, my daughter has always returned safely, but sadly that is not always the case. According to the National Autism Association, between 2009 through 2011, accidental drowning accounted for 91% of the total U.S. deaths reported in children with autism ages 14 and younger subsequent to wandering. Two out of three parents of wanderers reported that their missing children had a “close call” with a traffic injury with 32% having a “close call” with drowning.
The Interactive Autism Network study also found that more than 1/3 of children with autism who wander are never or rarely able to communicate their name, address or phone number. These children should wear/carry some type of ID. There are a number of great products available — bracelets, anklets, necklaces, shoe or jacket tags, ID cards, clothing labels, permanent ink ID on t-shirts or undergarments are all good options.
Some products to consider include: RoadID.com, medicalert.org or MyIDsport.com. However, in order for an ID to be useful, parents must consider what is best for their child. Parents must take into consideration the specific needs of their child, including sensory issues. If the child will remove a bracelet/necklace or anklet, it is obviously not a good choice. When my daughter wandered away, she left the house without her shoes (which included an ID tag), and her communication device (which also contained personal information). An innovative option is the use of prepared washable tattoos that bear ID information, Tattoos with a Purpose. In order for an ID to be effective, parents must consider the unique needs of their child when choosing an appropriate ID.
The Autism Wandering Awareness Alerts Response and Education (AWAARE) collaboration, whose mission it is to prevent autism-related wandering incidents and deaths, has some wonderful information and resources for parents. Their Autism-Wandering Prevention Brochure covers information about securing your home including installing locks, alarms and stop signs (as a visual prompt) on all doors and windows. It also emphasizes the importance of teaching your child how to swim and even practicing with shoes and clothes on. Although they are quick to point out that knowing how to swim DOES NOT ENSURE that your child will be safe in the water. The brochure also provides information and resources on tracking devices, and how to alert and educate your neighbors and first-responders about your child.
AWAARE’s Big Red Safety Toolkit includes toolkits for both care-givers and first responders. 
Their Caregiver Toolkit includes:
- Family Wandering Emergency Plan (FWEP)
- First-responder profile form
- Swimming Lessons Tool
- Root-cause Scenario & Strategies Tool
- Stop Sign Prompts
- Social Stories
- Caregiver Log
- Sample IEP Letter (Never allow restraint/seclusion practices into any IEP)
- How to Get Tracking Technology in Your Town
- General Awareness Letter to share with schools, homeowners’ associations, law enforcement
- Five Affordable Safety Tools
- Caregiver Resources One-sheeter
The First Responder Toolkit is something that should be shared with first responders in your area prior to any wandering incident. It includes basic information on autism, wandering, checklists, resources and tips on how to interact with a missing child with autism once found. It is very important that first responders understand that children with autism have a decreased sense of fear causing them to engage in high-risk behaviors such as seeking water, active road ways, heavy equipment or railroad tracks. Responders must also be made aware that the missing child may not be able to respond to the rescuer and may, in fact, run and hide from rescue teams. Every effort should be made to educate all children to “go to” police or other uniformed first-responders. As children get older, parents should be aware that wandering can also lead to high-risk contacts with law enforcement or members of the general public.
Please take the time to visit the AWAARE website to learn more. Hopefully, by becoming more educated on this issue and instituting these strategies, you can decrease the risks associated with your child wandering, and maybe even decrease your stress level a little.
Parents can receive a 25% discount at MyIDSport.com by entering promo code carlon15 at checkout.
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