Resource kits raise awareness of high risk of drowning for children with autism

Children with autism spectrum disorder (ASD) are 160 times more likely to die from drowning than the general pediatric population, according to research published in the December 2017 issue of Injury Epidemiology. That is why Heather McCrackin, RN, a Doctor of Nursing Practice (DNP) student at Cizik School of Nursing at The University of Texas Health Science Center at Houston (UTHealth Houston), is launching an Autism Drowning Prevention Resource Kit.

The kit provides clinicians and parents of children with autism evidenced-based professional education tools, interventions, and community resources to reduce the risk of drowning.

The idea for the kit came from her personal experience. In May of 2019, McCrackin’s now 4-year-old daughter, Kimber, was diagnosed with ASD. Nearly three years before Kimber’s diagnosis, a friend lost her 18-month-old son in a drowning accident and that was the first time McCrackin saw the startling statistics surrounding drowning and children with autism.

McCrackin said that children with autism may be attracted to water by the way light reflects off it, while the pressure caused by the water may feel like a weighted blanket to them, creating a comforting sensation.

According to the National Autism Association, accidental drowning accounts for 91% of deaths reported in children with ASD who are 14 years old and younger. That was the statistic that came back to McCrackin when she got her daughter’s diagnosis. “My heart sank because how do I protect my child?” said McCrackin, whose oldest daughter is a competitive swimmer. “We are around water all the time.”

McCrackin said it wasn’t easy finding a place that advertised active adaptive swim lessons, but eventually found a place that could teach her daughter swim lessons, set physical and behavioral barriers to water, and notified others that she is at higher risk of drowning.

As she started researching for her DNP quality improvement project, McCrackin realized there was a dearth of information on water safety for parents and care providers of children with autism.  

“After getting home one night from her swim lessons, I realized what I could do for my project,” she said. “I knew other patients were going through the same things.”

The solution was the resource kit. For clinicians, it focuses on the training needed to talk to parents about drowning prevention strategies and how to individualize treatment plans for their children.

“Clinicians have program treatment plans for safety risks and elopement, or wandering from caregivers, but don’t go into what happens if a child falls into a pond, for example — the survival part,” she said.

The kit for parents provides a list of critical resources including physical barriers such as stop signs, pool nets, pool fences, and water surface sensors. There is information on foundations that provide swim lesson scholarships for families, GPS tracker systems, law enforcement programs, and community partners who provide CPR training. The kit also includes a discount code for sensory-friendly goggles from a company that responded to McCrackin’s personal appeal.

Parents are often shocked when they learn of the drowning statistics.

 “The parents can’t believe they didn’t know their child was in danger and they hadn’t taken preventive measures,” McCrackin said.

For the project, once parents receive the kit from McCrackin, they will work with the clinician to follow up on continuous training and care using its resources. Data will be collected every three months via surveys to assess progress.

McCrackin’s project will begin with a small group at a behavioral learning center in Spring, Texas, for children with special needs. Her goal is that by December of this year, 50% of families with children with autism who are receiving services at the center will be utilizing the resource, and will have water safety interventions.

“No matter what, the end game is to spread awareness and education to save the lives of children on the autism spectrum in the face of their greatest threat — drowning.”

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