Autism Safety

I had the honor of speaking at a conference last week for Project Lifesaver International. This is an organization that “helps provide rapid response to save lives and reduce potential for serious injury for adults and children who wander due to Alzheimer’s, autism, Down syndrome, dementia and other related cognitive conditions. Project Lifesaver provides equipment, training, certification and support to law enforcement, public safety organizations and community groups throughout the country and nation. Project Lifesaver has over 1,200 participating agencies across the U.S., Canada, and Australia, and has performed 2,440 searches in the last 11 years with no serious injuries or fatalities ever reported.” There were about 100 ‘first responders’ (Sheriff’s Department representatives) from all over the country who attended my lecture about autism safety.

Performing the literature search and preparing for such a presentation allowed me to learn some really important facts that I would like to share with my ever-increasing theautismdoctor.com audience.

  • An oft-cited Danish study revealed that the death rate in autism is twice the expected rate for all ages. Mortality rates were particularly high if there were seizures and for female sex in that study.
  • Drowning, prolonged exposure, and other wandering-related factors remain among the top causes of death within the autism population.
  • More than 1/3 of children who elope are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing.
  • Even if they never wander – the first time is the worst time, so don’t have a false sense of security about your affected child.
  • Many autism-related wandering incidents and deaths have occurred at schools, day camps, and day care facilities where common supervision patterns are in place; therefore autism-related wandering cannot be solved by supervision alone. Additionally, it is simply unrealistic for any human being to maintain complete focus on any one person or thing 24 hours a day.
  • With that in mind, behavioral modification has been reported to result in 80% improvement in elopement activities.
  • In 2010, the Interactive Autism Network (IAN) reported their survey results of more than eight hundred respondents:
    • Roughly half of children with ASD between the ages of 4 and 10 attempt to elope. This rate is nearly four times higher than for the children’s unaffected siblings.
    • Between ages 7 and 10, almost 30% of children with ASD are still engaging in elopement behavior, a rate eight times higher than for their unaffected siblings.
    • Of children with ASD who attempted to elope, ~1/2 succeeded and were missing long enough to cause parents significant concern about their safety.
    • The situations were serious enough that 32% of parents in this situation called the police.
    • 2/3 reported their wandering child had a “close call” with traffic injury.
    • Nearly 1/3 reported a “close call” with drowning.
    • As many as 40% of respondents say they are concerned that their child with autism will wander out of the house at night.
    • 62 % say they stay away from public activities.

Various organizations have offered the following solutions:

  • A caregiver checklist
  • A family wandering emergency plan
  • A first responder profile form
  • A wandering prevention brochure
  • Door alarms
  • An ID on the child’s shoe, or other less-than-temporary body site
  • Visual prompts on doors and windows (STOP signs)
  • Medical ID bracelets
  • Inform extended family, friends, and especially neighbors
  • Securing the home (I have heard “I had no idea that he/she could open that lock” too many times)
  • Tracking systems and/or devices
  • Nanny cams
  • Service dogs
  • Social stories (REALLY good idea)
  • Determine if there is an underlying cause and perhaps address sleep issues or increase daily physical activity

Drowning is reported as the number one cause of death in autism so teach your children to swim and never trust that the skill alone is enough to save them.

As I have advised my patients for quite some time now, better behavior needs to be ingrained in the children, and you can’t just rely on technology or personnel. For me, perhaps the most surprising and useful statistic that I encountered was that greater than 50% of patients report that they had never received any advice or guidance about their child’s elopement behavior from a professional. I’m doing it now, thanks to Project Lifesaver.

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Brian D. Udell MD
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