by Mohamed Ibrahim
Friday May 23, 2025
Advocates have spent two decades trying to combat misinformation, which has led to a higher rate of measles in the Somali community. But some say more research can’t hurt.
Mahdi Warsama, Chief Executive Officer of Somali Parents Autism Network (SPAN) pictured on May 16, 2025. Credit: Dymanh Chhoun | Sahan Journal
As part of their mission to help parents whose kids have been recently diagnosed with autism spectrum disorder, the Somali Parents Autism Network offers several trainings, including a course called Autism 101.
The training teaches parents about their child’s needs going forward, and debunks myths and misconceptions about the disorder. One of those myths is a claim that autism is caused by routine childhood immunizations, like the measles, mumps and rubella (MMR) vaccine.
“That misinformation spread within our community like wildfire,” said Mahdi Warsama, CEO of the Somali Parents Autism Network, citing a thoroughly debunked research paper from the U.K. that suggests a link between autism and vaccines.
The false claim persists nearly two decades later, namely in the Twin Cities Somali community, where concerns about the false link among parents exacerbated measles outbreaks in 2017 and 2024 that disproportionately affected Somali youth.
Experts and some advocates say the misinformation has real-life consequences, and rhetoric about autism from the Trump administration — namely several recent and past comments from U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. — is hindering efforts to combat misinformation about vaccines and autism.
Others, however, welcome more research into the cause of autism, reflecting a divide in the Somali community on the issue as parents seek answers amid an increase in diagnoses.
Reviving debunked science
During his first news conference as HHS secretary last month, Kennedy suggested that environmental factors are to blame for causing autism, echoing past comments he has made claiming vaccines can result in autism and other disorders.
“These are kids who, many of them were fully functional and regressed because of some environmental exposure when they were 2 years old,” Kennedy said. “We have to recognize we are doing this to our children, and we have to put an end to it.”
Following those comments, Kennedy said he aims to put significant resources into researching what causes autism — including the collection of medical records to create a database — and vowed to find a cause by September.
Autism spectrum disorder is a developmental disability with a wide range of symptoms that could include issues with social interaction and communication. Decades of research points to autism being a genetic disorder, said Dr. Amy Esler, a University of Minnesota professor and researcher in behavioral neuroscience, but it’s not always easy to relay it to the public.
“There have been more than 100 [genes] identified as contributing to autism,” she said. “That makes it kind of difficult for scientists like me to give a very straightforward kind of story or explanation about how autism develops.”
Esler said research into vaccines, however, is much more definitive. Despite Kennedy’s insistence on using resources to do more research, it is widely accepted that there is no link to vaccines, she said.
“We consider that settled science, and continuing to look at that and to spend our precious research dollars toward that end feels very wasteful and inefficient,” she said.
A community divided
Warsama called Kennedy’s pledge “unfortunate,” saying it perpetuates misinformation about the disorder’s cause.
That is especially concerning, he said, following the release of data last year from a 2023 Centers for Disease Control and Prevention autism survey that found 1 in 16 Somali 4-year-olds in Minnesota have been diagnosed with autism, which is three times higher than the state average.
“By saying vaccines cause autism, they are causing harm. It has real-life consequences,” he said. “We tell parents that they need to vaccinate their children, however you want to do it, but make sure the children are vaccinated because there’s scientific evidence that vaccines work, and there’s no scientific evidence that vaccines cause autism.”
Warsama said the issue is controversial within the Somali community, and several parents who have attended the training sessions either ask about the merits of the claim or outright say they believe it.
“We don’t want to argue with them — we just tell them what we know, what the scientific community already knows about the causes of autism, and we leave it at that,” Warsama said. “We don’t want to have a hostile relationship with our clients so we get the word out but not in a confrontational way.”
Ayaan Jama, executive director of Maangaar Global, echoed Warsama and SPAN’s approach to interacting with parents who believe vaccines may have contributed to their child’s autism diagnosis. Though parents will come in with different deeply held beliefs about the cause of autism, Jama said focusing on debating those beliefs is counterproductive.
Helping parents understand autism, and providing resources and support in securing services and treatment for their children, regardless of parents’ beliefs, is a much higher priority, she said.
“We are focused on finding interventions, now that it’s after the fact,” said Jama, who’s the mother of two teenage daughters diagnosed with autism. “We encourage parents to concentrate on intensive early intervention, planning for the future and understanding what a future might look like with a child that may have different struggles.”
Though researchers and some advocates dismiss RFK Jr.’s call to look into potential environmental causes of autism, Jama said the effort has been well received among most of the people she has spoken with.
“What I like about RFK Jr. is he wants to just look into it, and looking into it should not harm anyone,” Jama said. “We always need concrete data, and I think that’s one way of honoring everyone’s experience and voices.”
