Kids with autism are prone to drowning. Florida is trying to prevent that

Garland Jones, recreational therapist and senior program director of the YMCA of South Florida's special needs program, teaches Mackenzie Wesley, 5, to breathe safely in water by using a ping pong ball as a visual aid. LA Johnson/NPR hide caption

WESTON, Fla. — Mackenzie Wesley sports a big grin and bright blue Lilo & Stitch swim gear as she runs into her weekly swim lessons. It's fitting, because the 5-year-old has something in common with movie character Lilo: She adores water.

"Whether it's the pool or beach, she enjoys it fully," says her dad Steven Wesley.

Mackenzie isn't alone: Many kids with autism share a natural love for water because it can be sensory bliss — the feeling on their skin, the pressure and the sparkle of the water can all be soothing. Lucky for her, Mackenzie lives here, less than an hour outside of Miami in a state that's dotted with bodies of water.

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But there's a tragic reality tied to that fact, as Mackenzie's mom, Brittany Bucknor, is all too aware. "In Florida, there's water everywhere, and also with kids her age, and also just being on the spectrum, it's a very — way higher — rate of having an incident of drowning."

Kids with autism are 160 times more likely than other children to die from drowning, according to a seminal 2017 study from Columbia University . In fact, in Florida, most children drown in backyard pools. That's largely because about half of autistic children have a tendency to wander from safe settings. That fact, combined with an attraction to water can make for a dangerous combination. Quality swim lessons can help.

That's one of the reasons Mackenzie's parents enrolled her in Swim Buddies, the YMCA of South Florida's low-cost program aimed at children with disabilities. It's also why the state of Florida, which has one of the highest childhood drowning rates in the nation, is expanding a voucher program on July 1 that will put children ages 1-7 who have autism at the front of the line for subsidized swim lessons. "We have tragic circumstances and stories across the state of Florida of young children with autism that are wandering away, they're eloping from their homes, from their classrooms," says Florida state Rep. Anna Eskamani, a Democrat, and one of the lawmakers who sponsored the bipartisan bill that changed the state's swim vouchers.

"These [tragedies] are so preventable, but if that child at an early age does not have access to drowning prevention and swimming lessons, then those statistics will only continue."

Recreational therapist Tiera Chaney works with Amir Williams, 6, during a recent Swim Buddies session. LA Johnson/NPR hide caption

Once the updated law takes effect, many healthcare providers across the state will begin providing parents of newborns with information about drowning prevention and the state swim program, Eskamani says. Generally, the voucher comes out to about $200, she says, and pays for up to eight swim lessons.

A "whole-person" approach

The YMCA of South Florida has one of the largest adaptive recreational programs for kids with special needs in the area, including those with autism, who make up the fastest-growing group of children with disabilities. "We provide this program for those with a variety of disabilities, primarily over 60 percent of our youth who do come have a diagnosis of autism," says Alison Bregman-Rodriguez, vice president of the YMCA of South Florida, where she oversees 64 locations, 27 of which serve children with learning differences. "This program, however, does serve all who want to feel like they belong."

When Mackenzie's parents learned that their local YMCA already had a robust and low-cost program for one-on-one instruction with kids with disabilities in mind, they jumped on the opportunity. "I really appreciate the program and specifically Miss Garland. She's been very patient with Mackenzie and challenged her too," Bucknor says.

She is referring to Garland Jones, who oversees the special needs recreational program here and also spends time working directly with swimmers, alongside other recreational therapists and trained volunteers. Jones agrees that patience is key in working with kids with disabilities, something that's emphasized in the training for instructors. "We come at everything with a whole-person approach instead of just a physical approach. We do the physical, the emotional, the social."

A selection of colorful, sparkly toys are often used for positive reinforcement and redirection in Swim Buddies lessons. LA Johnson/NPR hide caption

The program's hallmarks are individualization and one-on-one instruction rather than traditional group lessons. Staffers assess each child to learn about their needs and tailor their lessons in response. "We might have a kid who loves to get in the bathtub and splash around in the water or we might have a child who is very fearful of getting in the water," Jones says.

On this recent summer Sunday, Tania Santiago Perez is sitting poolside, observing the Swim Buddies lessons. She is a professor at Florida International University who studies effective swim instruction for children with autism, including at this YMCA, with research partner and professor Tana Carson. Their research shows that when done right , swim instruction for kids with autism can help save lives. "The fact that we have been seeing that in five or six sessions they're able to improve swim skills, to us, is very powerful," Santiago Perez says.

Each lesson begins with group introductions to help swimmers build trust with the teachers and fellow participants in the pool. "That's one thing to promote group cohesion and then the socialization with other kids," says Santiago Perez. "Because with kids with autism, sometimes they're very to themselves and that social behavior is one thing we want to develop."

After the meet-and-greet, each child must wait to be explicitly told it's safe to enter the water.

The adaptive swim lessons at the YMCA of South Florida serve more than 600 children with disabilities, but the program is overwhelmed with requests. Jones says she hopes the state will provide more funding to help facilities like theirs meet the need. LA Johnson/NPR hide caption

Because many autistic children are prone to "eloping," or running away suddenly, Santiago Perez says instructors are trained to stay no more than an arm's length from each swimmer.

During one Swim Buddies session, a swimmer dashes out of the pool. "So the therapist is trying to redirect him back to get inside the pool," says Santiago Perez as she points to the instructor gently but firmly guiding the child physically and with clear verbal commands.

Next, the instructor tries luring the child back into the pool with a sparkly pink rubber duck, which does the trick. "Toys help a lot because at the end of the day, they're kids and kids learn by play and positive reinforcement," Santiago Perez says.

In another corner of the pool, Garland Jones is working with Mackenzie Wesley on safe breathing techniques above the water because, in the past, putting her face under water has been uncomfortable and led to choking. Jones is using a bright blue ping pong ball in front of Mackenzie so she can see how her breath is physically moving the ball.

Once Mackenzie is eased in, Jones helps her practice blowing bubbles in the water, making a humming noise to show what it should sound like. "Hmmmm," mimics Mackenzie. Then she ducks her head under water and pops back up, with a smile on her face. "Mackenzie has grown so much. I'm so proud of her," says Jones, who's been working with her in Swim Buddies for over a year. "We had a couple of instances where she was [swallowing] water a lot." Now, she blows bubbles and goes under water like a pro.

Demand overwhelms supply of lessons

Parents looking on during Swim Buddies lessons have heard about the swim voucher program, and many were excited that it could make life-saving lessons affordable for lower-income families. "People who don't have kids on the spectrum don't take in mind that we're paying a lot already for stuff like behavioral therapy, speech, occupational therapy," says Augusto Sandino, whose son David has been in Swim Buddies for a year and a half. "All the programs, everything is money, man. So every little bit helps, and also, creating these inclusive communities is a big win."

While Florida maintains a list of approved providers around the state, Jones and Santiago Perez both share the concern that many facilities lack enough qualified instructors. "You have people who are biters, spitters, who will scratch, things of that nature," Jones says. "I just think we need more individuals who are trained in working with individuals with special needs so that they can be successful."

The YMCA of South Florida is already overwhelmed with requests for its specialized swim lessons. Alison Bregman-Rodriguez, the vice president, says they do their best to find a spot for every child, but they don't want to compromise the quality of lessons they provide. And while the voucher may increase demand, facilities like this often have to leverage other sources of money to keep programs like Swim Buddies afloat.

Researcher Tania Santiago Perez of Florida International University helped train some of the instructors at the Swim Buddies program. Her research has found that even after five or six quality lessons, most kids with autism showed improvement. LA Johnson/NPR hide caption

Even before the new priority for children with autism, demand for swim lessons outstripped supply. "The problem is access," says Santiago Perez. In the program's first year, only about a third of families who applied for vouchers actually got them. She worries that the gap will only increase.

NPR reached out to the Florida Department of Health for details about how the changes to the swim program will work. They declined an interview and did not answer questions about how many vouchers would be available.

As Mackenzie Wesley's swim lesson comes to an end, her parents wrap her in a towel and share that just a few weeks ago, she had a big milestone: She was invited to her very first pool party. "She was in the pool like she was a pro, an expert," her mom says. "She had her little floatie and she was doing her own thing, so she's been a lot more confident in the water and a way stronger swimmer for sure."

This, says Garland Jones, is the kind of milestone that makes her work so rewarding. It means Mackenzie is on her way to having the skills that will allow her to embrace her natural love for water, and to do it safely.

Edited by: Nirvi Shah Visual design and development by: LA Johnson