Why Children With Autism Are Drowning
Data suggests that drowning is the leading cause of death for kids with autism. Often, they can be attracted to the serene qualities of water as a "low-sensory area" that eases nerves, experts say. (Tu Trinh/Unsplash)
SPRINGFIELD, Mass. — On a Sunday night in June, 6-year-old Zayan Mayanja escaped from his home through a window. Early the next morning, the nonverbal child on the autism spectrum was pronounced dead at Lowell General Hospital.
He had drowned in Nabnasset Pond in Westford overnight, found behind a residence on Lake Shore Drive South, police said.
Less than a month later, in the town of Sutton, a 4-year-old girl went missing from her home and was later found unresponsive in a neighbor’s pool. Identified by police as “Eva,” she was also on the autism spectrum.
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The two drownings are tragically not anomalies. Children with autism spectrum disorder are 160 times more likely to drown than neurotypical children, research published in the American Journal of Public Health has shown.
Why water is such a danger
Over the past few summers, there have been several instances in Massachusetts of children on the autism spectrum who wandered off and drowned in bodies of water, some near their homes. Often, these children can be attracted to the serene qualities of water as a “low-sensory area” that eases nerves, experts say.
“One time a father said to me that he had his son’s hand, his son wiggled away, he turned his head and he was laying in a fountain,” said Cindy Freedman, co-founder and owner of Swim Angelfish, an adaptive swimming and water safety company. “It is just such a powerful draw for some of the kids. And then the kids that avoid the water, it’s just as dangerous.”
Freedman has been working with swimmers with autism, Down syndrome, ADHD and learning disabilities in Massachusetts, New Hampshire, Connecticut and New York for 25 years. A recreational and occupational therapist, she explained how children on the autism spectrum crave the pressure on their bodies that happens when they enter the water.
“A lot of the kids that seek input love that feeling,” Freedman said. “It gives them a release of neurochemistry and dopamine, and supersedes all of the safety you empower in them.”
She added, “Our kids love to go to the bottom because the deeper you go, the more pressure there is. They want to end up at the bottom.”
Nancy Sullivan, a clinical psychologist and associate director of the Autism Spectrum Center at Boston Children’s Hospital, described a “moth to flame” scenario.
“Kids can be obsessed with water, bodies of water, interested in visiting them, seeing them, being in them,” she said. “They’ll know exactly where their neighbors’ pools are, where the lake is, the beach is.”
In general, wandering, or “eloping,” is a common behavior associated with autism that puts children at risk when they’ve fled caregivers or a secure environment. Sullivan said it can take “one second” for a child to be attracted to something and want to seek it out.
In the case of water, “it has so many sensory aspects to it,” she said. “It’s wet, it’s cool, it flows, it has a texture.”
What the numbers show
In 2017, using data from more than 32 million death certificates, researchers at Columbia University’s Mailman School of Public Health determined drowning was the leading cause of death for children with autism. The findings underscored the need for swim lessons, parent education and a broader understanding among swim instructors, lifeguards and other related professions.
“Every young child should be in swim lessons, in my opinion, but more so this population,” Sullivan said.
At the time, the researchers noted the inclusion of autism on death certificates varied, so their findings were likely “undercounted.”
Ann Scales, spokesperson for the Massachusetts Department of Public Health, said the state doesn’t maintain data reflecting how many children with autism suffer drowning deaths because “that information is rarely included in the death certificates.”
Media reports over the years have shown these tragic accidents happening across the state: in the Merrimack River, a pool at a Westborough apartment complex and at a park on Castle Island in South Boston.
The state does maintain the ages of people who drown each year. Between 2019 and 2023, according to numbers from the Registry of Vital Records and Statistics and Department of Public Health, 30 children under 14 died from unintentional drownings. The majority were between ages 1 and 4.
The data includes people who drowned in Massachusetts, as well as Massachusetts residents who drowned out of state. In 2023, a total of 62 people drowned, preliminary data shows. There were 63 and 66 drownings in 2021 and 2022, respectively.
The majority of drownings take place during the summer months, so data for this year is incomplete and expected to increase. As of June 27, the most recently available death certificate data, nine people had drowned in Massachusetts.
Teaching life-saving skills
Alex Dominguez has two sons, 10 and 8, who are both diagnosed with autism. From early ages, the Andover mother watched how “brave” they were in the water, often pushing their limits.
“They both have always been attracted to water ever since they were really teeny,” she said. “It’s always definitely a major watch, and I’ve had to be physically in the water with the kids. The safety awareness wasn’t there and it needed to be.”
Swim instruction catered to children with autism was a priority for Dominguez. Years ago, she enrolled both of her sons with Freedman’s company Swim Angelfish, which holds lessons at pools around the state. They still go weekly.
“It taught them skills beyond my expectations,” she said. “We were just at a pool in July and it’s actually such a relief now. Of course (I’m) there, but seeing them in the water and knowing they have those skills … The skill of getting to a ledge, staying afloat is life-changing.”
Through Swim Angelfish, Freedman, who lives in Pembroke, N.H., and her co-founder Ailene Tisser created free adaptive swimming resources and toolkits that are recognized worldwide. In 2020, their program was featured on Good Morning America.
Freedman believes children of all abilities can and should achieve some level of independence in the water, as well as understanding of safety.
One of the hallmarks of Swim Angelfish’s program is creating a “ritual and routine” when it comes to water. They teach children to verbally ask or nonverbally gesture/point before entering water, even a bathtub, engraining in their minds the ritual of asking when it comes to all bodies of water.
They encourage swimmers to create an extended routine following that, which may include clasping hands, touching toes, or singing a favorite song — creating additional time for intervention if needed.
“We’ve actually had parents here in Massachusetts that said their son got away, he was at the edge of the pond doing his routine and they had the extra 15 seconds to get there and grab his hand,” Freedman said.
Last summer, after 7-year-old Anna Mburu, of Lowell, drowned in the Merrimack River, Middlesex County District Attorney Marian Ryan, becoming more aware of the elevated risk to children on the spectrum, began thinking about holding a water safety event.
“Drowning takes so many of our children,” she said in an interview. “It’s devastating and it’s so preventable.”
A water safety event
Ryan’s office recently hosted a free adaptive water safety day at the State Police headquarters in Framingham, featuring instruction from Swim Angelfish and the State Police dive team. It was designed for children with autism, anxiety, sensory needs and motor challenges who struggle with impulsivity and attraction to water, as well as fear and avoidance of it.
Ryan said the response has been so overwhelming, her office will likely hold the event again.
“This is something that I really think is just critical for public safety,” she said.
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