Imagine taking your young, healthy son in for a routine vaccination, then receiving a diagnosis of autism only a few months later. That’s what happened to Minneapolis resident Abdinasir Fidow and his son, according to a report broadcast recently on HBO.
Despite all scientific evidence to the contrary, Fidow believes the measles, mumps, and rubella (MMR) vaccine is the cause of his son’s autism. The belief is so strong that Fidow decided against getting five of his other children vaccinated. “I’m not willing to do that again, because I’m scared for the MMR,” Fidow told HBO. “I don’t want to lose another kid again.” Fidow is not alone; many other Somali parents in Minneapolis share his beliefs
In 2008, many in the tight-knight Somali community were alarmed by the seemingly rising rates of autism spectrum disorder (ASD) among their children. Many had never even heard the word autism before coming to the U.S., where the measles vaccine is also less common. In response to their growing concerns, the University of Minnesota conducted the largest-scale study ever looking into the number of Somali children with autism in any U.S. community.
The study found that Somali and White children are about equally as likely to be identified with ASD in Minneapolis. The key finding of the study, according to senior researcher Amy Hewitt, is that all Somali children with autism also had an intellectual disability, compared to only about one-third among non-Somali kids.
The findings show that there are differences in the number and characteristics of children with ASD across certain racial and ethnic groups in Minneapolis, but they don’t explain why they exist.
This was misinterpreted to make the claim that Somalis are more likely than other kids to have autism—a deep-seeded fear among many Somali parents. While “it is correct to say that autism hits the Somali community very hard and there’s a high rate of prevalence,” Hewitt told HBO. “It starts to become inaccurate…when people say it’s a ‘higher’ rate or the ‘highest’ rate.”
This opened the door to anti-vaccine activists like Andrew Wakefield, the discredited former doctor who used fraudulent research to argue that the MMR vaccine causes autism to visit the Somali community in Minneapolis. Wakefield and others fueled fear within an immigrant community that was already up against language barriers in a new country.
The impact was quick. In 2004, according to the Minnesota Department of Health, 92 percent of Somali-Minnesotan children were vaccinated with MMR. After 2008, rates of vaccination dropped by 5 to 7 percent each year. By 2013, only 45 percent of Somali-Minnesotan children had been vaccinated.
Experts at the University say the findings call for more research on how ASD affects Somali and non-Somali children and families differently. Children and families living with ASD in Minneapolis are not being identified as early as they could be. New findings could be used to understand where improvements can be made so that all children in Minneapolis are identified and connected to appropriate services as soon as possible.
The Minnesota Department of Health is taking steps to alleviate concerns and educate the local Somali community about both vaccines and autism, including advocacy for early intervention therapies for children with autism. Another solution is to work with doctors and health clinics to give patients more time with doctors so they can get their questions answered and work with an interpreter. The biggest key to success, according to experts, is not to characterize people who question vaccines as selfish or dumb, but to listen to the community’s specific concerns with empathy and understanding.
“The Somali community is resilient and strong, and they’ve gone through a lot of hardships,” Anab Gulaid, a Somali-American living in Minneapolis told NPR News. “They just want healthy children. I understand their concerns.”