Doctors Weren't Listening To Somali Immigrants' Autism Concerns. Then Anti-Vaxxers Did.

Deeqa Hussein can’t put her finger on exactly how or when the vaccination disconnect happened in her community.

For years, the large number of Somali immigrant parents in the Twin Cities area vaccinated their children at rates as high as 92 percent ― outpacing virtually every other ethnic group. And then, Hussein said, many parents just stopped.

“I felt like there was a lot fear and anxiety surrounding the MMR vaccine,” said Hussein, a special-education teacher with the Minneapolis Public Schools who also serves as the vice president of the local Somali Parents Autism Network and has two sons with autism.

“In the Somali community, it’s very close-knit,” she said. “Word of mouth is much more powerful.”

Children of Somali descent in the Twin Cities are now vaccinated at about half the rate of non-Somali children. Those same children are the ones primarily affected by the ongoing measles outbreak in Minnesota that public health officials are scrambling to contain.

The Minnesota Department of Public Health now provides a daily update of the increasing totals. As of May 10, there were 51 measles cases confirmed across three counties, with the majority clustered in Hennepin County. All but five of the cases are Somali Minnesotans, and nearly all of them are children.

Public health experts and community advocates like Hussein all point to targeted, ongoing efforts by anti-vaccination activists like disgraced British doctor Andrew Wakefield and his disciples, who peddle anti-vaccine conspiracies like the widely discredited notion that vaccines contribute to autism risk.

As public health officials look at how to contain the current outbreak and re-tool their outreach going forward, several acknowledge a crucial element that for years went overlooked in their interactions with the Somali community.

Minnesota’s first wave of Somali immigrants came in the 1990s during the country’s civil war ― less than a decade after several years of measles outbreaks in Somalia and neighboring countries like Kenya and Ethiopia affected hundreds of thousands of people.

Somali Minnesotan vaccination rates remained among the highest of any group for the next two decades. Inexplicably, around 2008, Somali parents began to notice a cluster of autism cases in their community. Two years later, a special University of Minnesota project studying autism prevalence found that local Somali children aged 7 to 9 were identified as having ASD at a rate almost three times higher than the average population.

It was a perfect storm for Wakefield and his acolytes to enter with convincing ― though debunked ― narratives about how the government was lying to parents about vaccine dangers, and arguments that measles are only temporary while autism is forever.

Before public health and scientific experts realized their data-based approach had failed to allay the concerns of the Somali community, the anti-vaccination activists had seized the narrative with answers of their own.

“There’s nothing wrong with them, there’s something wrong with us,” Donna McAlpine, a University of Minnesota sociologist whose research includes the racial and ethnic disparities in health outcomes, said of those parents who chose to forego vaccinations.

McAlpine believes the scientific and public health community failed to really listen to Somali parents and internalize their concerns. In the early days of the autism cluster appearing, McAlpine heard numerous stories of Somali parents who felt their concerns about the condition weren’t landing with health officials.

“A lot of parents felt that when they would go to a doctor or have contact with public health, it felt more like we were lecturing them: ‘Do you you know the science?’” McAlpine said. “In some ways, it was public health’s fault because we weren’t listening.”

Anti-vaccine activists like Wakefield and his followers entered, offering not just a listening ear but purported answers for why so many Somali children were developing autism. The activists held meetings at Somali restaurants and community centers, while local anti-vaccine groups like Vaccine Safety Council of Minnesota explained to worried parents their legal rights regarding vaccination exemption laws.

McAlpine said the Somali community has long been forming groups in an effort to get science or health experts to pay attention to the autism rates in their community ― something Hussein separately confirmed.

Now, that same audience is less interested in hearing the public health officials’ response to the measles outbreak.

“And it’s hard to turn it around because there’s such a distrust of the majority opinion because we weren’t paying attention,” McAlpine said.

Kris Ehresman, director for infectious disease at the Minnesota Department of Public Health, said their response at the time focused on the safety of the vaccine for measles, mumps and rubella, or MMR.

Around 2008, Ehresman said, the anti-vaccine group started to target the community and has continued its efforts since.

“Even in the past couple weeks, during the outbreak, they’ve been providing misinformation. They’re very aggressive in their approach with the community,” Ehresman said.

Perceptions ― and stigma ― shape parents’ response

A 2014 University of Minnesota study that examined autism rates in children from the Hmong, Latino and Somali communities found that both Somali and white children had autism at higher rates than the overall population’s rate of 1 in 48. For Somali children, the rate was 1 in 32, and for white children, 1 in 36.

The disabilities and behavioral problems associated with autism were more severe, however, in Somali children.

As a result, McAlpine said, the research did little to change the perception among Somali parents that their kids had autism at significantly higher rates than white children.

“White kids were more on the spectrum, like Asperger’s,” McAlpine said. “But the Somali kids had more severe intellectual disabilities and the behavioral problems associated with autism.”

While researchers don’t know why this is happening, some of the outcomes may correlate to how parents approach an ASD diagnosis.

Hussein, the special-ed teacher who has two children with autism, said Somali parents don’t always acknowledge autism in their children as quickly as white parents, which can delay the young child getting speech and occupational therapy or help with life skills.

“It’s a stigma, like, ‘What have you done in the past for your child to have this?’” Husseun said. “People that don’t vaccinate their kids are the ones who already have a sibling with autism.”

Hussein said families with children who have autism can be isolated, with other families avoiding play dates or shaming a child’s autistic behavior that can manifest as aggression or speech difficulties.

“My name isn’t Deeqa — I’m ‘Deeqa with the two boys with autism,’” she said. She added, “I don’t go to mosque with them.”

Despite the fact that the current measles outbreak has even led to hospitalizations, Hussein said the feelings within the community about the safety of vaccines are divided ― and raw.

“Some parents say, ‘I grew up in Somalia, I wasn’t vaccinated and I don’t have autism.’ And they accuse pro-vaccination people of corruption,” Hussein said.

And while nothing holds as much sway in the community as recommendations from other parents, those who extol the virtues of vaccination are sometimes treated with suspicion by the vaccination-averse parents they’re trying to convince.

“I really think they took advantage of the community’s anxieties here,” Ehresman, of the Minnesota Department of Public Health, said of the anti-vaccination groups. But she said this kind of science-skeptical response echoes trends seen more broadly than just in Minneapolis.

A new approach: ‘Spouting data doesn’t cut it’

“Years ago, you could be scientist, you could provide data, you could make a recommendation, and that was enough to convince the public about an issue. That’s no longer the case,” Ehresman said. “The public just has a different view of science now, whether it’s climate change or anything. It used to be that science is science ― it’s apolitical.”

Ultimately, she said, public health officials have learned from measles outbreaks and are adjusting their approach. The MDPH has hired a member of the Somali community as an outreach coordinator, while the department is working with Somali community and faith leaders to help engage with parents who have concerns or questions.

“Just sort of spouting off data doesn’t cut it. It’s about narrative and it’s about telling stories,” Ehresman said. “Part of the lesson learned was the community engagement and having them say, ‘This is what we need, this is what’s important to us.’”

Hussein said she hopes to see more outreach from the scientific community, as well as training of clinicians and pediatricians in cultural competency “to take the fear out of vaccination.”

Ultimately, she said, she doesn’t want the Somali community to be defined by the outbreak.

“Not everyone is ignorant,” she said. “Not everyone is refusing to vaccinate their children.”