‘On an awareness journey’: Somali autism summit brings together advocates, families

It took time for Mahad Dahir to find his voice. Now he takes every opportunity to speak up.

The son of Somali immigrants was diagnosed with autism at age 2 and nonverbal until he was 4.

In 2022, he became student body president at Highline College in Washington state, a platform he has used to raise awareness of the stigma around mental illness and disabilities.

“We need to tell our stories because storytelling is very powerful,” Mahad said earlier this week, at one of the first Somali summits on autism in Minnesota.

The inaugural Maangaar Summit in Bloomington brought together Somali parents, professionals, and service providers, all united by a single mission: to address the challenges faced by families with autistic children within their community. Maangaar, or “unique mind” , is a Somali term for autism.

It’s an urgent issue in Minnesota, where 1 in 16 Somali preschool children were diagnosed with autism in 2020. That number is more than three times the state average.

Keynote speaker Hamza Mohamed, an “autism ambassador” from Seattle, spoke to both the cultural barriers that leave families with autistic children feeling isolated and the opportunity to move forward.

“When we look at autism, we have to change our way [of seeing it],” he said. “Autism is not a disease.  Autism does not need a cure. It’s a disability.”

“We are on an awareness journey,” he added.

A common refrain among Somali parents — “Cidna ha u sheegin,” meaning “Don’t tell anyone” — reflects the fear and shame that can accompany an autism diagnosis, Hamza said

Hamza shared his own journey as a father, using his experiences with his son to inspire others to break the silence. “My son taught me patience,” he said, his emotion palpable as he encouraged families to open up and share their stories.

“To be empowered, we need to empower other parents,” he said.

Anisa Hagi-Mohamed, one of the summit’s organizers and moderators, articulated the reality many Somali parents face. “We are doing the work that should be handled by the county, cities, and state,” she said.

“Parents are connecting through WhatsApp groups, text messages, and in-person gatherings, yet they receive little to no support. We are drowning in our efforts, and the added burden of racism and discrimination in the human services field only exacerbates our situation.”

Seeing a room full of attendees made Anisa happy: autism is finally getting the attention it needs. “The Maangaar Summit stands as a testament to the resilience of Minnesota’s Somali community,” she said. “It highlights the urgent need for increased awareness, accessibility, and advocacy in addressing the unique challenges faced by families with autistic children.”

Discussion panels tackled practical solutions, offering families tools and resources to advocate for their children. Experts in the field emphasized the importance of culturally competent services, accessible to the East African parents of children with autism.

After gaining experience as a special education teacher, Mohamed Ali shifted his focus to providing therapy for individuals with autism. His transition reflects a commitment to supporting the unique needs of this community, he said. He works as a senior manager at Breakthrough Therapy Center in St. Cloud, and is the nephew of Anisa Hagi-Mohamed.

The center, which currently has 56 clients, provides applied behavior analysis (ABA) therapy. The exercises are based on learning and playing for kids — “therapy mixed with fun,” Mohamed said. ABA aims at enhancing helpful behaviors and limiting harmful behaviors for people with autism.

To Mohamed it makes a difference. He said autism should be seen not as a disability but a “different ability.” There is no cure, but it is treatable, with the right support.

However, many centers that provide ABA therapy have long waiting lists, delaying enrollment for children and families.

When her son was diagnosed with autism, Mona Abdi Gaagale said there were not as many ABA therapy centers in Minnesota. After being in denial of the diagnosis, she and her husband had to find out by themselves what autism is and what treatment they should seek. Speech therapy, occupational therapy, swimming or music were provided by different centers.

“There was no support system in place,” added Mona’s husband, Abdisamad Nur Bidar, who also spoke at the conference. He urged fellow parents to confront denial and recognize the importance of early intervention, warning, “If you don’t start the process early, you are damaging your own child.”

Their son is now 21 and, last June, Mona opened Aaran Therapy Center, in Woodbury. She provides ABA therapy for autism.

“One thing I want parents to tell their kids: advocate for themselves, because we cannot always be with them,” she said. Knowing that a kid with autism can tell others about his disability is key to his own safety.

Suggestions for families also included engaging in occupational therapy at home with simple activities like playing with homemade playdough or slime to enhance fine motor skills.

Identifying autism at a young age can significantly impact a child’s development, said Abdulkadir Hassan, chair of the Somali Parents Autism Network and one of the conference organizers. That allows for tailored support strategies that can enhance their social skills, communication abilities, and overall quality of life, he said.

The summit featured multiple panels that addressed various aspects of autism, including a father’s panel, siblings panel, mother’s panel, and provider’s panel. Anisa, who moderated one of the panels, emphasized the need for families to take up space and share their experiences.

Bisharo Jama feels like some members of the Somali community do not understand her daughter’s disability. More than 10 years ago, her daughter was diagnosed with Rett syndrome, a disability that was previously categorized as part of the autism spectrum.

“She cries a lot, she doesn’t sleep, she gets frustrated, she bends her head to the wall, she has a lot of seizures, it’s very difficult,” said Jama, who noticed that some parents avoid taking their autistic children out in public. She had to convince her local mosque to let her daughter attend despite the noises she would make.

At the Maangaar Summit, she hoped to find resources and share her experience with other parents.

“This is your very devoted community,” she said, referring to the crowd around her. “You feel alone, but when you come here you think “Oh I’m not the only one with a child with disability, I am not the only one who is going through this,” you feel you connect.”

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