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ASPartOfMe
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17 May 2022, 7:15 am

Slow-minded’ becomes ‘unique mind’: Somalis in Minnesota create new terms to define autism and build acceptance

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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,” Anisa, 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.

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 Anisa, 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,” Hussein 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 Manta, 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

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.

Anisa 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 Anisa, she says. Anisa and her daughter ended up leaving early.

I could see the frustration on their faces,” Anisa 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.

In 2020, Hussein, 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, Hussein 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 Manta.

Aar Manta 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 Manta performed a song called “Kow,” written by a Somali linguist and professor, Said Salah Ahmed, to raise autism awareness.

On April 11, Aar Manta 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 Manta told Sahan Journal. “That’s how I came across some of the mothers who were replying in the comments.”


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman