Abdinasir Fidow, a Somali father of seven living in Minneapolis, had heard of the measles outbreak spreading in his state, the worst flare-up in Minnesota in three decades. But even fear of the potentially deadly virus wasn’t enough to motivate Fidow to inoculate five of his children with the measles, mumps, and rubella (MMR) vaccine. “I’m not willing to do that, because I’m scared for the MMR,” Fidow said. “I don’t want to lose another kid again.”
Fidow’s eldest son, Abdullahi, 14, did get the vaccine, over a decade ago. A few months later, Fidow said, Abdullahi was diagnosed with autism and severe intellectual disabilities. Despite all scientific evidence to the contrary, Fidow believes that his son’s diagnosis is directly linked to the measles, mumps, and rubella vaccine — a belief shared by Somali parents he knows.
For many in the Somali community, autism is an American-born condition. Those in the neighborhoods around the “Somali Mall” in Minneapolis, a city that houses the largest Somali population in the country, hadn’t even heard the word “autism” before coming to the U.S. from Somalia, where the measles vaccine is also less common. Yet for almost a decade, fewer and fewer Somali children in Minnesota are inoculated because of their parents’ fears, propelled by bad science and anti-vaxxer efforts, of autism diagnoses. Now, Minnesota has seen more measles cases just since April than the entire U.S. in all of 2016. And 84 percent of those cases have occurred in the Somali community, mostly in children.
The misinformation tidal wave about autism started in 2008, when worried Somali parents in the state reported seeing kids diagnosed with Autism Spectrum Disorder at alarming rates. These concerns made their way to Amy Hewitt, a senior research associate at the University of Minnesota’s Institute of Community Integration, who in 2013 conducted the largest-scale study ever looking into the number of Somali children with autism in any U.S. community. The results of her study were interpreted as evidence that Somalis are more likely than other kids to have autism — something Somali parents had long feared.
The thing is, that wasn’t entirely true.
“The findings of the study got misrepresented in headlines and news bites,” Hewitt told VICE News via phone. “It is correct to say that autism hits the Somali community very hard and there’s a high rate of prevalence. Where it starts to become inaccurate is when people say it’s a ‘higher’ rate or the ‘highest’ rate.”
Instead, the central finding of the study, which counted the number of 7-to-9-year-olds living in Minneapolis with autism in 2010, was this: All Somali children with autism also had an intellectual disability, compared to only about one-third among non-Somali kids, according to Hewitt. In fact, the study specifically notes that prevalence of autism in Somali and white children was relatively the same.
Nonetheless, misleading stories about the study ripped through Minnesota’s close-knit, 40,000-strong Somali community. At the same time, anti-vaxxers like Andrew Wakefield, the discredited former doctor who helped catalyze the movement against the measles, mumps, and rubella vaccine, began making a concerted effort to connect with the Somali community in Minnesota.
The combination of events had a near-instantaneous effect. After vaccinations among Somalis in Minnesota dropped dramatically in 2008, they dipped even further after the University of Minnesota’s 2013 study, according to data provided by the Minnesota Department of Health. Even Kris Ehresmann, the infectious disease director at the Minnesota Department of Health, expressed concern that the perceived findings of the study had exacerbated Somalis’ reluctance to vaccinate their children and that anti-vaxxer groups seized on those fears.
“By focusing on ‘immunizations and autism,’ not only do we not move any of the questions or concerns about autism forward, but we end up diverting a million dollars — probably, or actually, more than that — and responding to an unnecessary outbreak,” she said. “If those resources could have been redirected, that would be so much better both for the community as well as for public health.”
Yet families in Minneapolis hold the belief that their kids are more than twice as likely to develop autism than non-Somalis in Minneapolis and thus, the fear of vaccinating their children.
“It’s very hard to combat an emotional feeling with physics,” said Paul Offit, director of the Vaccine Education Center at The Children’s Hospital of Philadelphia and the co-inventor of a rotavirus vaccine. “The problem is that we don’t know the cause or origin of autism. The likes of Andrew Wakefield‘know.’ They’re certain of it. They’re wrong — but as a physician, that’s what you’re going up against.”
Nearly four years after Hewitt’s study, no subsequent research has been conducted as to why intellectual disabilities hit Somali children with autism harder than non-Somalis or why deficiencies in daily living skills, problem-solving, and decision-making differ drastically too. Hewitt, whose office currently has a small, unfunded study underway that builds on her initial research, offered several speculations that she thinks warrant further scientific investigation: autism misdiagnoses in the Somali community, the lower vitamin D levels Somalis typically experience, and adverse effects from the skin-lightening creams that many Somali women use, which often contain mercury.
For now, the measles outbreak among the Somali community in Minnesota seems to be slowing. No new cases have been reported in the three weeks, and July 29 begins the “all-clear” date, which signals the crisis is over.
Although this outbreak hasn’t yet caused any fatalities, many community leaders and imams have held events to encourage parents to vaccinate their children, and the Department of Health has hosted outreach sessions with Somali consultants to help dispel lingering concerns. Since the crisis, vaccination rates among Somalis have increased 16-fold, according to the Minnesota Department of Health. “Nothing educates like the virus,” Offit said.