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Leah Samuel, STAT
Leah Samuel, STAT
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Amusement parks, lakes, neighbors’ pools — they are dangers that families of children with autism have long known anecdotally to beware of.
Jessica Lapen discovered this about 10 years ago. She was at a family gathering at her parents’ home when she noticed that her son, Micah, was missing.
“He was 6 or 7,” she recalled. “We knew that he would leave safe areas. We found out that he had gone down the road to a neighbor’s house, and when they saw him, he was climbing the ladder to their above-ground pool.”
An authoritative study earlier this year put some numbers to the fear. Drowning is the most common fatal injury among children with autism, researchers found. Children with autism age 14 and younger are 160 times as likely to die from drowning as the general pediatric population, with drowning risk peaking from age 5 to 7.
Such cases make headlines many times each summer. Now, researchers are working to understand the risks and how to counteract them — including helping parents and swim instructors teach water safety to autistic children.
“The causes of drowning for kids with autism is multifactorial,” said Dr. Jeremiah Dickerson, a pediatric psychiatrist who directs the autism diagnostic clinic at the University of Vermont Medical Center. “Impulsivity is one part of it. They may not see the water as a danger, that they could fall in or that they could drown.”
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The sensory aspects of water can also attract children with autism, though for different reasons, said Michele Alaniz, a behavioral therapist in California. “For autistic kids who seek out stimulation, they are attracted to the way it sounds, the play of light on it and the feeling of buoyancy and the way it feels on the body,” she said. For kids who are driven to isolating themselves from stimulation, on the other hand, “water can be very calming, especially under the water, where there is a muffling of external sound and a kind of quiet,” said Alaniz.
That can lead kids to submerge themselves in water and not realize the danger — or to not have the skills to act if they do.
“We’ve put these children in the pool, and where others would sort of cling to the wall and hold on, the ones with autism would just release and sink,” said Alaniz.
“Even when they know they’re in trouble, they may not have the communication, the language to say they need help,” said Dickerson. “And with the motor discoordination some of them have, they may not be able to pull themselves out of the water.”
The good news is that research shows children with autism can learn to be safe around water. A study published in September in the Journal of Autism and Developmental Disorders offers preliminary evidence that even children with severe autism can learn techniques to avoid drowning.
“It’s more of a challenge to teach kids with severe autism,” Alaniz said. “But, yes, they can learn to swim safely, [with] skills like breath control and how to turn over in the water.”
Advocacy organizations, community centers, and schools are creating water safety classes for children with autism. Pathfinders for Autism offers a tip sheet for swim instructors who may encounter students with autism. Autism Speaks provides swim classes for children with autism and financial need with swim lesson scholarships, awarding them to 134 organizations in 31 states since 2014.
Some of those scholarships went to children at the Texas Swim Academy near Houston. Founder Kathleen McMordie, a nurse and swim instructor, explained that there are important accommodations needed for children with autism. The adjustments include getting them accustomed to being touched and to the feel of the water. Instructors may also have to teach lessons or parts of lessons in a different order than usual. These are among the reasons that swim lessons for children with autism are given individually, rather than in the usual group setting.
But the most important requirement, said McMordie, is being patient with the way children with autism receive, understand, and follow instructions. She gave the example of having children place their faces in the water, which is among the first lessons taught in swim classes.
“With neurotypical kids, you might just say, ‘OK, now, face in.’ But for a child with autism, it’s a little different. You say, ‘OK, put your face in the water.’ And then you wait.”
It takes more time for kids with autism to move mentally from instruction to action, McMordie explained. “You wait while they process: ‘OK, she said to do this, and now I do this with my head, and then I do this.’ And they put their face in.
“But if you don’t wait, and you’re just going, ‘Put your face in, put your face in, put your face in,’” she added, “you’re interrupting that process for them.”
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In addition to giving autistic children more time with instruction, Dickerson also recommends taking a “comic-book approach” to swim instruction for autistic children by using pictures to help the children understand what they are told.
The Texas Swim Academy uses this method. “It’s just a picture of one of the instructors doing something, like putting our face in the water or kicking with a kick board,” said Patty McPherson, the school’s aquatics director. “We took pictures of them doing these things, then we laminated the pictures and use them to show what to do.”
Jessica Lapen credits such lessons with keeping her son, Micah, now 16 years old, safe over all the intervening years since that frightening day a decade ago.
“If the neighbor hadn’t found him back then, it would have ended very differently,” she said. “But after that happened, we really worked with him on learning to be water safe.”
This article is reproduced with permission from STAT. It was first published on Sept. 27, 2017. Find the original story here.
Leah Samuel is a staff reporter for STAT. A journalist for over 25 years, Leah’s work has appeared in newspapers and magazines across the country, including Harvard Magazine, Labor Notes, The Chicago Reporter, and PublicSource.org. Leah is also a film fan, history buff, science nerd, and trivia nut. When she's not working on a story, she frequently replaces her notebook and pen with yarn and a crochet hook.
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