May 16, 2022, St. Paul, MN, Sahan Journal: ‘Slow-minded’ becomes ‘unique mind’: Somalis in Minnesota create new terms to define autism and build acceptance https://sahanjournal.com/health/autism-somali-new-terminology-community-acceptance-minnesota/
The Somali language hasn’t included a word for “autism.” Parents say that omission plays into community stigma and misunderstanding. A recent social media post from the Somali musician Aar Maanta highlighted efforts from Somalis in Minnesota to create positive language to identify autism.
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. Anisa, 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.
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.”…
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….
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. ...
Anisa Hagi-Mohamed is part of a group of parents advocating for their children with autism by creating positive terminology in the Somali language. Credit: Anisa Hagi-Mohamed