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–were diagnosed with autism in the past couple of years. Anisa 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 super genius. That’s not what it always looks like,” Hagi-Mohamed, who is Somali, said. “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. Hagi-Mohamed, who has worked as a teacher and graphic designer in St. Cloud, joined a group to discuss autism terminology in Somali. They’ve been meeting over Zoom and Clubhouse, a social audio app, since last August.

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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.” The term may encourage Somali speakers to frame autism in a way that highlights a person’s assets rather than deficits. For Hagi-Mohamed, it was the perfect way to describe her children.

“We need to teach the community. To do that we have to come up with the language,” Awjama said. “The Somali population, they’re more speakers, they’re more an oral community. For example, they make poetry. If we find the terms, it’ll be easier to understand.”

Now, the translation effort has attracted the attention of a well-known Somali musician, Aar Maanta, who is using his music to bring awareness to autism in the global Somali community. His Facebook posts about autism, from mid-April, quickly became a platform for advocates to discuss the new Somali terms for autism.

Yes to ‘maangaar’; no to ‘maangaab’: Here’s the new way to talk about autism in Somali

New terms

Maangaar: Unique mind
Maangooni: Separate mind

Old, negative terms

Qof kala dhiman: Incompetent person
Maangaab: Slow-minded
Qof jiran: Sick person
Qof waalan: Crazy person

A look at the data: Is autism more common among Somali immigrants?

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. 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 Centers for Disease Control and Prevention, researches the number of children living with autism and other developmental disabilities in Hennepin and Ramsey counties.

Researchers began looking at autism prevalence in the Somali community, after the Minnesota Department of Health found an alarming number of Somali children entering special education programs in preschool in 2008.

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 eight-year-old children in Minnesota have autism. In the Somali community, 1 in 29 eight-year-olds have autism.

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

In an email 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. But she added that more research is needed to look into these trends.

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

‘I had to fight those feelings of shame’

Hagi-Mohamed’s daughter Nasteexo loves to explore. Hagi-Mohamed described her as a joyful child who delights in playing outside, especially in the water. When the weather is nice, Nasteexo spends time on the balcony of their apartment in St. Cloud.

Nasteexo was diagnosed with autism at three years old. Anisa said she showed clear signs of autism early on: She would run away and exhibit high-energy behaviors. She’s also nonverbal, which is common among people with autism.

On the other hand, it took a while for Anisa’s oldest child to receive a diagnosis. She described her son Uthmaan as a creative kid who’s always drawing and playing video games. She first noticed her son exhibiting signs of autism when he was two years old. Even though he didn’t have trouble speaking, he wouldn’t make eye contact. He had a distinct way of lining up his toys, she recalls. And while he often acted bubbly, he preferred to play alone.

Uthmaan didn’t receive an official diagnosis for autism until four years later—just a few weeks ago.

“He’s just a very curious child. That’s one of his biggest strengths. He’s a quick learner,” she said. “That’s another reason why people didn’t think he was autistic.”

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

“I had to fight those feelings of shame,” she said. “I need to see if my son is autistic. I need to get him help. With every step that I took, those feelings disappeared.”

Hagi-Mohamed added that this sense of stigma isn’t unique to the Somali community. She recently brought her daughter to an indoor playground, where her daughter let out a lot of pent-up energy. The other parents at the playground looked sideways at Hagi-Mohamed, she says. Hagi-Mohamed and her daughter ended up leaving early.

“I could see the frustration on their faces,” Hagi-Mohamed said. “And there were no Somali parents; they were all white. It becomes really isolating.”

Anisa notes that she has found support from other parents raising children with autism. They will ask each other questions about navigating support services and therapies.

Currently, Hagi-Mohamed is writing a children’s book of affirmations, featuring a main character who is based on her daughter.

What is ‘autism’ in Somali?

In 2020, Awjama, a pharmacy student at Creighton University in Nebraska, participated in a program that aided Somali people dealing with opioid addiction. The experience left him inspired to improve awareness about issues that often aren’t discussed in the Somali community, such as mental health and developmental disorders.

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 living with autism, medical professionals, and linguists to come up with a few possible terms. While this working group never made a formal announcement, the effort caught the attention of UK-based Somali musician Aar Maanta.

Aar Maanta had visited Minnesota schools in 2018, during a month-long residency in the state. While writing a bilingual children’s album here, 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 to the autistic community,” Aar Maanta told Sahan Journal. “That’s how I came across some of the mothers who were replying in the comments.”

Anisa was one of the mothers tagged in some of the comments.

“It’s shocking how negative people were,” Anisa 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 Hussein and his collaborators had come up with, such as, maangaar. In Somali, maan translates to “mind,” and gaar roughly translates to “unique.”

Aar Maanta later wrote another post highlighting some of the new terms and thanking people like Hussein and Anisa for leading the initiative.

“There are people who don’t have a lot of resources,” Awjama said. “Or maybe they don’t like to be open about having an autistic child. Or they’re an adult who’s autistic but doesn’t want to say it, because they don’t want to be discriminated [against],” Hussein said. “We have to actually know what is going on before we make changes.”

Hussein said he plans to collaborate with Aar Maanta in the future to further spread awareness about autism. He’d like to help Somalis in Minnesota and the U.S. to learn more about signs and symptoms, treatment, dealing with discrimination, and navigating resources—all in Somali.

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