Tears flowed at the makeshift memorial along Minnehaha Creek where a 4-year-old boy with autism drowned last week, but talk among mourners at the site near his mother's home in Hopkins also turned to what might be done to prevent similar tragedies in the future.
Local groups dedicated to providing resources for Somali families of children with autism have since picked up the discussion. Protecting young children with extra vulnerabilities can be a challenge even without the language and cultural barriers faced by immigrant families.
"The community needs to come together and understand that this is a serious problem when it comes to not only raising a child with autism but also that it's a serious safety issue," said Mahdi Warsama, CEO of the Somali Parents Autism Network (SPAN), which provides resources and support for Somali families with autistic children.
Waeys Ali Mohamed was last seen the morning of June 9, leaving the apartment building in Hopkins where his family lived. His body was found the next morning by a volunteer searcher about 500 yards downstream from the apartment, following an extensive search effort. Hopkins police called it a tragic accident.
Warsama said a simple step would be to increase the prevalence of interior door locks with number combinations, which could prevent a child from wandering away from home. But he said apartment complex managers often resist those modifications. In some cases, he said, his organization has assisted Somali families facing eviction for installing a lock.
"The families have to know that they have a right to ask for a special accommodation if they have a child with autism," said Warsama, who has a child with autism.
The Chorus apartments, where the boy lived, did not return calls seeking comment.
Children with autism are four times more likely to wander away from home, and are 160 times more likely to drown than children without the disorder, according to the nationwide nonprofit Autism Society.
Warsama said the drowning has him wanting to develop a training course specifically to teach water safety. Dr. Linda Quan, a Seattle-based physician who has studied drowning and how to prevent it for 40 years, said there has been "enormous interest" nationwide in teaching children with autism how to swim.
"We know it's hard to teach children with autism how to swim, but it can be done," Quan said. "There are more and more studies that they can obtain swim skills."
Quan emphasized that even with swimming or water safety knowledge, "that still cannot be relied upon to protect them."
Aside from direct prevention methods, Warsama and other nonprofits and professors said the incident highlights a broader need for more culturally-appropriate services for Somalian parents of children with autism, whom they said often face additional barriers to resources.
Amy Hewitt, the director of the Institute on Community Integration at the University of Minnesota, said there's an overall dearth of well-trained professionals for Somali children "and every other child from a diverse racial, ethnic or linguistic background."
"The importance of working with people who can communicate with you in your preferred language, who understand your cultural background, where trusting relationships can be built is critical," Hewitt said. "We're just not there yet."
Warsama's nonprofit, SPAN, is one of the groups trying to improve the services available for Somali families. The group provides "Somali culture 101″ trainings, in which workers visit county service providers, schools and health facilities to educate on the needs and accommodations a Somali client might have.
Some of the challenge is a stigma around autism that exists within the Somali community, according to SPAN chairman Abdulkadir Hassan.
"This stigma causes Somali parents to hide their children, and it becomes very hard for schools and other professionals who provide services to figure out who is qualified for the services," Hassan said during an interview at SPAN's offices in Sabathani Community Center.
In 2015, a study released by Hewitt and others found that Somali children with autism were more likely to have an intellectual disability than non-Somalis. But she said those trends are no longer applicable after studying additional data collected since the 2015 report.
"We don't have good enough data to know whether prevalence rates in the Somali community are higher or not, but we know that many children in the Somali community live with autism," Hewitt said.
SPAN is one of four nonprofits included in a joint statement Friday that mourned Waeys' death and vowed to collaborate on preventing additional drownings.
"Waeys is not the first autistic child that has been lost to elopement, in water especially, but we desperately wish for him to be the last," said Ellie Wilson, executive director of the Autism Society of Minnesota.
She emphasized that accidental deaths like Waeys' happen due to a "chain of inequities" ranging from family isolation and community stigma, to lack of culturally responsive disability services, to renter policies.
"We hope that more stakeholders understand the nuanced connection between these barriers and seek to confront them with a multifaceted prevention response," she said.
Here are some links to Minnesota nonprofits that provide services to families with autism:
- Autism Society of Minnesota - www.ausm.org
- Multicultural Autism Action Network - www.maanmn.org
- Somali Parents Autism Network - www.somaliautism.org
