Somalis in Minnesota create new terms to define autism and build acceptance

As a mother of three children, Anisa Hagi-Mohamed knows what autism looks like. Her two oldest — a 6-year-old son, Uthmaan and a 4-year-old daughter, Nasteexo — received an autism diagnosis in the past couple of years. Hagi-Mohamed also knows that she doesn't see autism represented accurately in the media or in her community.

"You'll see on TV a very stereotypical white man who's a supergenius. That's not what it always looks like," said Hagi-Mohamed, who is Somali. "Then I thought about, in my language and culture, how is it seen? The reality is autism is seen with a very negative stigma attached to it."

On top of that, she added, the word "autism" doesn't exist in Somali.

But that's changing: Over the past year, a group of medical professionals, people with autism, and parents have been leading efforts to come up with positive terms to talk about autism and neurodiversity in Somali.

Hussein Awjama, a recent pharmacy school graduate, also joined the call to share research he had been doing since 2020 about autism terminology in Somali.

After coming up with five terms, the group narrowed the list down to two. One of them, maangaar, translates to "unique mind." For Hagi-Mohamed, it was the perfect way to describe her children.

Now, the translation effort has attracted the attention of a well-known Somali musician, Aar Maanta. His Facebook posts about autism, from mid-April, quickly became a platform for advocates to discuss the new Somali terms.

The word "autism" comes from the Greek word for being withdrawn into one's self. The term was first created in 1911 by psychiatrist Paul Eugen Bleuler. Autism spectrum disorder is a developmental disability caused by differences in the brain, according to the Centers for Disease Control and Prevention (CDC). People with autism may communicate, behave, interact, and learn in different ways from other people.

Scant data exist on the prevalence of autism in specific immigrant communities. But the Minnesota-Autism Developmental Disabilities Monitoring Network, a group of programs funded through the CDC, researches the number of children with autism and other developmental disabilities in Hennepin and Ramsey counties.

The monitoring group reports that autism rates for Somali 8-year-olds track closely with the state's overall autism rates in 2018, according to Jennifer Hall-Lande, the project's principal investigator. Overall, 1 in 36 8-year-old children in Minnesota have autism. In the Somali community, 1 in 29 8-year-olds have autism.

Among 4-year-olds, Somali children registered higher autism rates than other racial and ethnic groups. In Minnesota, 1 in 44 4-year-olds have autism, compared to 1 in 21 Somali children of the same age.

In an e-mail to Sahan Journal, Hall-Lande said it's possible the discrepancy arises from autism being identified earlier in the Somali community than it is in the wider Minnesota population.

Still, advocates have raised concerns that stigma in the Somali community is making it difficult for people with autism to get the support they need, especially as resources are already tough to navigate.

Hagi-Mohamed took on the role of advocating for her children, making sure doctors and teachers were supporting them. But she noted that in the Somali community, autism is often discussed with shame — or it's hidden and ignored.

In 2020, Awjama, a pharmacy student at Creighton University in Nebraska, participated in a program that aided Somalis dealing with opioid addiction. The experience left him inspired to improve awareness about issues that often aren't discussed in the Somali community.

Autism was an example of a medical condition that was difficult to describe in Somali, Awjama noted. So he brought together a group of parents, people with autism, medical professionals and linguists to come up with a few possible terms. While this group never made a formal announcement, the effort caught the attention of Aar Maanta, the musician.

While writing a bilingual children's album in Minnesota, he met a lot of Somali students who had autism.

The experience inspired him to make his music more inclusive. Aar Maanta performed a song called "Kow," written by a Somali linguist and professor, Said Salah Ahmed, to raise autism awareness.

On April 11, Aar Maanta posted the music video on Facebook with the translated caption "#Autism what is it called in Somali?" The post received nearly a thousand comments.

"A lot of them were very degrading and really insulting," Aar Maanta said. "That's how I came across some of the mothers who were replying in the comments."

Hagi-Mohamed was one of those tagged in some of the comments.

"It's shocking how negative people were," she said. "They said words like 'idiots' in Somali or 'someone who doesn't have a mind.'"

Other commenters used Aar Maanta's post to highlight some of the terms Awjama and his collaborators had come up with, including maangaar.

Aar Maanta later thanked people like Awjama and Hagi-Mohamed for leading the initiative.

Awjama said he plans to collaborate with Aar Maanta to further spread awareness.

Translating autism to maangaar, he said, is just the start.

This story comes to you from Sahan Journal, a nonprofit newsroom dedicated to covering Minnesota's immigrants and communities of color. Sign up for its free newsletter to receive stories in your inbox.