Drowning deaths of two autistic kids push water worries to the surface in Minnesota

When Fay Jede heard that an 11-year-old boy with autism was missing last week in Eden Prairie, her first thought was to rush immediately to help with the search. 

Her second thought was, “not again.”

Four months earlier, volunteers were searching for her autistic son, Waeys Mohamed. The 4-year-old was later found drowned in Minnehaha Creek in Hopkins after he wandered from his home. 

The Eden Prairie search for Mohamed Mohamed also ended tragically, with the boy’s body found in a nearby pond.

“I met his mother — like everything came back to me, like I had the same feeling that I felt when Waeys was drowned,” Jede recalled. “The same emotions, the same stress, like everything was so the same.”

Mohamed was the fourth child to drown in the Twin Cities metro area this year. He and Waeys were both nonverbal. Their deaths have renewed calls to do more to help protect autistic children, who experts say are drawn to water.

Jede has spent the last four months advocating for more resources and awareness for autism, especially in the East African community where access and knowledge of autism resources is limited.

Drowning is one of the leading causes of death of people with autism, according to the National Autism Association. Research at Columbia University found that children with autism are 160 times more likely to die from drowning compared to their neurotypical peers.

Racial disparities in drowning are the highest among Black children, the federal Centers for Disease Control and Prevention has found.

‘Children are children’

The recent drownings led Anisa Hagi-Mohamed, a longtime Twin Cities advocate for children on the autism spectrum, to propose that swimming lessons be an option for a child’s Individualized Education Plan, or IEP.

Mohamed’s death spurred her to start a petition to make the swimming lessons available through school or billable through insurance. It has more than 1,800 signatures. 

“We just thought something we need to push for is free swimming lessons,” said Hagi-Mohamed, who helped coin the first Somali word for autism. “This is a place of 12,000 lakes, you know. You’re not going to get away from a body of water.”

Teaching kids to swim is a proven solution to prevent drowning, but Hagi-Mohamed said there are barriers to that when you take into account the cost and systemic discrimination of Black people in swimming spaces. 

“We can have our super long term goals of awareness and reducing the stigma, but what do parents need right now?” she said.

“What parents need is access to swimming lessons. They have a one-off during the summer, or they have opportunities here and there, or maybe there's a scholarship for minority children through an organization, but that too, there's a huge wait list,” she added. “It’s just not accessible in any way.” 

She said state Sen. Zaynab Mohamed, DFL-Minneapolis, has reached out to her on the issue. 

“My hope is that this leads to long lasting changes and actual legislation that will protect future children, whether they’re neurotypical or neurodivergent, children are children at the end of the day,” Hagi-Mohamed said. “If one child dies, that’s a tragedy and it should spark change.”

‘Not like it is in the movies’

It may be a while before this proposal makes it to any lawmaker’s desks, but Foss Swim School has been working on local solutions at its Twin Cities area locations, teaching kids of all abilities and needs how to swim.

“We try to help our students understand, who are old enough to kind of conceptualize that, that water can be dangerous,” said Robert McDonald, Foss’s program training manager. “And with parents, especially parents of neurodivergent students, drowning is not like it is in the movies.”

Drowning is often silent. McDonald said children on the autism spectrum tend to  enjoy the water, which can make it even more dangerous if they don’t have a healthy respect for it. 

A lot of their classes for young children focus on building confidence in the water but also learning about water safety. Like how to float upwards and turn around to swim back to where they may have fallen.

“I think, families in general come into lessons looking for the solution, or they look for the fix — ‘I want my kid to learn to swim so that, you know, maybe I can read a book while they’re at the pool or whatever,’” he said. “But the reality is that water is dangerous, and we all need to learn how to have a healthy respect for that, and it’s amplified with students who are neurodivergent.”

Foss offers scholarships for students for once a week lessons, but McDonald said if lessons can’t be your first step, just learning about water safety can be life saving.

While learning to swim is important, Fay Jede is seeking more concrete solutions. She wants fences put up around open bodies of water in neighborhoods with autistic children, and she wants landlords to allow residents to put special locks on their doors for children who are prone to wandering.

Jede said her son Waeys was her hero and in the four years she had him she learned a lot about autism. She also learned she never wanted another mother to go through what she experienced.

“I have been trying to heal as I start advocating for neurodiverse kids,” Jede said. “I am trying to heal as I am advocating for kids like Waeys.”

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