I’ve spent a lot of time lately reviewing products related to elopement and resources for families. Bolting, running, elopement, and wandering are one of the most challenging behaviors for families, in my experience. They cause a high level of stress in the home and in the community settings and may lead to injury, or even death, for an individual.
A child with autism, or an adult for that matter, may not respond in the expected way to almost any emergency. Fire departments, police departments, and emergency responders should have access to quality training on autism.
Below is a list of trainings and information that I was able to locate for emergency responders and other safety officials. Please feel free to pass along those resources available in your own communities.
First Responders (Fire, Police, Search Teams, Rescue)
AWAARE cites data from April 2011, as collected by the Kennedy Krieger Institute, that children with Autism attempt leave safe areas (elope, bolt, run, wander) at a rate that is four times that of their siblings, particularly between the ages of 7 and 10 years old. Another surprising statistic included is that half of the parents asked stated that a professional had never advised them on elopement.
This organization provides free content for download including prevention materials, safety information, and emergency plans to be completed by family directly from their website homepage. (Scroll to the bottom of the page after clicking the link and items are listed in red print).
Additionally, they provide information on Big Red Safety Box program, sponsored by the National Autism Association. This program provides families with several safety products (including 2 door/window alarms, ID tags, and a wristband) for free, based on donations from others of $35 per kit.
Hopefully this initiative will continue to provide awareness of the dangers of wandering and support those most in need of safety items.
So I have a friend who’s currently working camp for the summer. Which camp you ask, any camp, lots of different camps. It doesn’t really matter except that it’s a community-based camp for all children. Currently; however, a camper manages to end up in challenging situations. Safety-concerning situations: wandering away from the group, attempting to swim without supervision, playing in unsafe areas, you know, the usual reasons professionals find it challenging to work camp.
The child is verbally warned, and then told directly which behaviors are unacceptable; however, when my friend tries to apply a consequence, the child immediately states, “Am I in trouble? Am I being punished?” to which other adults (i.e, counselors, 1:1 paraprofessionals, mental health supports) respond, “Of course not. No you’re not being punished. You’re not in trouble. It’s okay.”
Because of this consistent behavior chain a few things are happening:
1. My friend is increasingly frustrated and having negative interactions with the camper, as well as other camp staff.
How do you deal with professionals who are more concerned about upsetting a child in the short-term, than about maintaining a child’s safety and teaching skills? I understand these particular professionals (hopefully) do not see the situation that way and are attempting to thwart a massive tantrum, but essentially, that’s the issue. “I’d rather the child be happy than safe.” I’m sure most staff would recognize how absurd this sounds, but they may not realize their actions in the moment are supporting this very principle.
Some recommendations:
1. Determine what’s important. A team (parent, staff, nurse, mental health team, crisis team, etc) meeting might be helpful to discuss the camper’s behavior and assess the top priorities (i.e., safety-related behaviors). Try to limit concerns to no more than 3. One priority to focus on is even better.
2. Decide, as a team, what the rules and consequences (and possible rewards) are for these behaviors. All adults need to handle behaviors in the same manner, even if that means that my friend’s approach needs to change. Develop a script if necessary- the more consistent the response the better.
3. Brief the camper or invite them to the team meeting, if appropriate. State clearly the expectations. “I know that sometimes you don’t like camp rules. You worry you’re in trouble. If you leave the safe area, you will need to sit with a counselor for safety. You might be in trouble for a few minutes. We will still like you and you can still come to camp. You cannot be unsafe at camp and you need to follow the rules.” This may be too much information for a child, so develop a brief script to meet your camper’s specific needs.
4. Implement the new, unified plan. Support staff implementation with consistency. Support camper compliance with visuals, if necessary, or review of the rules prior to tempting situations. Monitor progress and revisit as necessary.
Some of the most successful professionals I know do an excellent job of creating a team that truly feels responsible as a group. To the point that other students in the group can identify the rule, a crisis response plan, or support their peers. Nothing makes me as excited as hearing a child or camper say (appropriately), “Let’s all stay as a group so we’re safe.” Consistency in expectations does that and it’s a wonderful thing!
How do you address other professionals who may have different expectations or use a diagnosis as an excuse?
A few days ago, I was at a red light that turned green, but a group of motorcycles were traveling together. In order to stay together, approximately 15 motorcycles ran the red light after signaling their intent to do so with hand motions (i.e., waving) and having another member block traffic. Would someone driving with with an autism diagnosis have been able to recognize their intent and maintained safety in this situation?
Lissa Robins Kapust, of the DriveWise program at Beth Deaconess Medical Center in Boston, says that “driving in traffic is like reading a person’s face,” often due to gestures, motions, and signals that take place routinely in traffic. “The driving scene may be friendly, it may be frenetic, it may be angry,” she says. She also states that “Driving is so busy on the inside and outside of the car- it’s the most complex thing we do.”
Dr. Jamie Dow, the medical adviser for safety issues in Quebec’s auto insurance and licensing agency, concurs, “Driving is a social act. It involves obeying rules and cooperating with other drivers.” When considering challenges of driving for those with an ASD diagnosis, such tasks would be anticipated to be challenging. Such challenges may explain why one survey found that only 24% of individuals with an Autism Spectrum Disorder identified themselves as independent drivers, compared with 75% of the general population (Cecilia Feeley, Center for Advanced Infrastructure and Transportation at Rutgers University). Concerns are clearly numerous; however, some identify positive traits of a driver with a diagnosis of Asperger syndrome that may benefit other drivers. For example, Dr. Patty Huang of the Children’s Hospital of Philadelphia considers it a positive that teenagers with Asperger syndrome are rule-driven saying, “They’re less likely to be reckless.”
“Narrating” while a parent drives is another recommendation, as it can demonstrate the ability to use executive function skills and provide safe practice. Science Times also stresses that narrating raises awareness of the components of driving, and identifying areas that will be challenging.
A doctor’s exam is important and awareness of sensory issues can also be important for driving success. Is a visual processing issue present? Will the individual be able to focus on the road if a car alarm is accidentally set off in a nearby parking lot? Kathleen Ryan, an instructor at Driving MBA, feels that it is important to not set timelines, but to “think about the opportunity” to drive. She also recommends slowing tasks down to target one piece of instruction at a time and allowing time to role-play situations such as being pulled over by a police officer, being caught in traffic, or other stressful scenarios. DriveWise also offers a comprehensive driver examination prior to considering a driver license test that evaluates multiple domains.
Another consideration is installing a passenger-side brake to allow safety during driving practice. Science Times states that “a temporary passenger-side break can cost less than repairing a significant dent.”
Conclusion
Both parents and members of the general population are often concerned about safety and the challenges with executive functioning, including multi-tasking, often seen in those with an ASD diagnosis. Whether or not to provide an individual with the opportunity to test for a drivers license is often debated in schools, homes, and community settings. The independence and self-reliance afforded by a license are tempered by safety concerns of responding to stressful driving situations. As with most decisions, the costs and benefits must be carefully weighed and determined in light of the individual. In many circumstances, the opportunity to take a driver license exam should be considered carefully for anyone- adult or teenager- regardless of diagnosis or lack thereof.
What other considerations do you think should factor into granting a drivers license?
There are few behavioral concerns that hold as high of priority as ‘elopement.’ When I say that a child ‘elopes’ I mean leaving a designated area or known whereabouts. When you consider individuals who have a lack of awareness of societal rules (including safety-related rules), highly impulsive tendencies, and lack of clear communication skills and you have the trifecta of risk.
As a teacher, little strikes fear into the heart like a “Code Adam” or a “Purple Rectangle” or a “<school name> for” announcement. These announcements all translated to panic that someone was somewhere and- for the sake of honesty- a small prayer thanking the behavior gods that the missing child wasn’t one of my students. Followed by an quasi-organized, anxiety-driven search of everywhere, no matter how small or unlikely (have you ever searched under a pillow or behind a computer monitor for a 12 year-old child- because I have).
A few products have been developed to target or minimize this risk. They all carry their own risks and rewards, but they are compiled here for consideration. Items are listed in no particular order and are beneficial for a wide variety of individuals, not just those on the spectrum. (I do not receive any affiliate benefits from these companies, with the exception of Amazon Affiliate links, which go to help support this website).
a. Project Lifesaver: A small personal locating unit is in a wrist-watch sized device. The individual wears the device at all (most) times and if they are reported missing, GPS technology can be employed to track them quickly, within 1 mile. The device is $99, with an additional $30 to set-up, including a battery change every month. Programs are available to provide the system for free or reduced cost for those who need financial support.
b. Kid Smart Medical Alert: An engraved medical alert tag is included and family notification is promised, if a child is taken to a hospital or other emergency responder. Wandering Assistance ensures that family is contacted, based on the ID number on the medical alert. A wallet card is also provided with care instructions (which could be a skill target for an individual to hand over the card if stopped by police or other emergency response worker). A medical record can be maintained on your child as well. A variety of alert tags are available including necklaces and bracelets. Additionally, a shoe tag is a great alert with minimal contact for sensitive individuals and sports wrist bands are also available. Cost is $29.95 initially, with $20/year afterwards.
c. Child Locator Personal Safety Alarm: A flat-rate purchase price of $29.99, this item is a teddy bear that clips to a shoe or belt loop. A key ring contains the remote and can be kept by a family member. Pressing the button produces an intermittent beeping noise and can be used to locate the child within 150-ft. As the transmitter is a teddy bear shape, this may be more appropriate for younger children and is best used in relatively close proximity (i.e., amusement park, or for a child who hides in the home/car).
d. Door Alarms & Window Alarms: Alarms may be an option to alert a family that an individual is outside the home. If a child manages to unlock a door and leave, the family will then know which door they exited through and be able to begin a search immediately after elopement. Another item that may be important to consider is a pool alarm, which will sound an alarm if an individual is in the pool unattended, such as a child who may jump in or a pet that may have fallen in. Alarms vary in price based on sophistication of technology and whether a subscription to monitoring services is necessary.
e. Temporary Safety Tattoos: Although not a preventative measure, if a child is lost while in an unknown environment, a temporary tattoo may provide some peace of mind. Consider options for allergies (a child may be offered a snack by mall security while waiting for family), or an autism awareness tattoo. Some are even offered for school field trips. It is important to consider what information you are comfortable sharing with someone who may pass your child at a park or mall; however, before applying a temporary tattoo. Although the information may help security or emergency responders, it may also identify your child as a target for those with less-positive motives. As a low-tech option, tattoos range from $0.50 to $12. and may be worth consideration.
What items or low-tech options do you use to prevent running away?
