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.
By HIBAH ANSARI
Tuesday May 17, 2022
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-MohamedAs 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.”
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.
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’
Anisa’s daughter Nasteexo loves to explore. Anisa 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.”
Anisa 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.”
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.
Currently, Anisa 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, 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.”
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 Manta’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 Manta 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,” Hussein 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 Manta 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.
Do you have questions about autism and your child? Here’s where to go first.
To find out if a child has autism, the Minnesota Department of Health recommends sharing questions or concerns with your child’s pediatrician. You can ask the doctor questions about how your child is playing, learning, speaking, or acting.
Parents can also speak to their child’s teachers to learn about behavior they’re exhibiting at school and to connect with special-education services.
If a child is under five years old, parents can contact Help Me Grow, a partnership of Minnesota agencies that helps coordinate early intervention and special education services for children.
The state also offers videos about autism and the services available for people living with the condition. These videos are available in Somali, Hmong, and Spanish.
The state has compiled these resources in the Minnesota Autism Resources Portal, including a list of signs and symptoms to look for.
Core symptoms include differences in social interaction and communication, as well as restricted, repetitive patterns of behavior. Additional signs include differences using eye contact, reading social cues, speech patterns, reacting to changes in routines, and more.
Children develop differently, and these individual markers don’t necessarily mean that a child has autism. But an early diagnosis can help advise parents so children can receive services they need to adapt at school and home.