Empowering Families: The Somali Autism Summit Sparks Critical Conversations

The inaugural Maangaar Summit, hosted in Bloomington, was a vibrant gathering that drew Somali parents, healthcare professionals, and service providers together. They shared a singular goal: tackling the hurdles faced by families with autistic children in their community. “Maangaar,” which translates to “unique mind” in Somali, symbolizes their focus on autism. This issue has become particularly pressing in Minnesota, where, by 2020, one in 16 Somali preschoolers was diagnosed with autism—more than triple the statewide average.

Keynote speaker Hamza Mohamed, an “autism ambassador” based in Seattle, discussed both the cultural obstacles that can isolate families and the potential paths for progress. “We need to reshape how we perceive autism,” he asserted. “It’s not a disease, nor does it require a cure. It’s a disability.” He emphasized, “We are on an awareness journey.”

A deeply ingrained sentiment among Somali parents—“Cidna ha u sheegin,” meaning “Don’t tell anybody”—illustrates the stigma often linked to an autism diagnosis. Hamza drew upon his own experiences as a father to inspire others to shatter this silence. “My son has taught me the meaning of patience,” he shared, his voice thick with emotion. He urged families to express their stories. “To empower ourselves, we must uplift other parents.”

Anisa Hagi-Mohamed, one of the summit’s organizers and moderators, voiced the reality confronting many Somali families: “We are stepping in where the county and state should take charge.” She noted that while parents connect through WhatsApp groups and in-person meetups, they often find themselves scrambling for support. The dual burdens of racism and discrimination in human services only compound the challenges they face.

Witnessing a full room of attendees brought Anisa joy; the conversation around autism is finally blossoming. “The Maangaar Summit represents the unyielding spirit of Minnesota’s Somali community,” she stated. “It underscores the crucial need for heightened awareness, accessibility, and advocacy for families navigating the complexities of autism.”

Discussion panels at the summit refined practical approaches, equipping families with actionable resources and skills to advocate for their children. Experts emphasized the necessity of culturally sensitive services tailored to East African families. Mohamed Ali, a senior manager at Breakthrough Therapy Center in St. Cloud and Anisa’s nephew, shared his journey from special education teaching to providing therapy for autistic individuals. “Therapy should be fun,” he remarked. The center offers Applied Behavior Analysis (ABA) therapy to 56 clients and integrates play into learning processes.

To Mohamed, it’s all about perspective. Autism should be regarded not as a limitation but as a “different ability.” While no cure exists, with proper support, it’s manageable. However, the long waiting lists for many ABA therapy centers can stall the enrollment process, prolonging uncertainty for families.

Mona Abdi Gaagale recalled her experience when her son received an autism diagnosis: ABA therapy centers were scarce, leaving her family to navigate treatment options alone. Their journey included discovering speech, occupational, and even swimming therapies across various centers. “There was no support system in place,” added her husband, Abdisamad Nur Bidar, who also addressed the conference. He urged other parents to embrace early intervention and confront denial. “Starting early is crucial; anything else risks your child’s future.”

Now 21, their son inspired Mona to launch Aaran Therapy Center in Woodbury last June, providing ABA therapy tailored for autism. “I encourage parents to teach their kids to advocate for themselves,” she said. It’s vital for children with autism to communicate their needs for their own safety.

Practical suggestions for families encompassed engaging in occupational therapy at home, with simple activities like crafting playdough or slime to boost fine motor skills. Abdulkadir Hassan, chair of the Somali Parents Autism Network, emphasized that early identification of autism profoundly influences a child’s development, allowing for personalized support strategies that enhance social skills and communication prowess.

Throughout the summit, various panels covered diverse aspects of autism, featuring discussions among fathers, mothers, siblings, and service providers. Anisa, who moderated one panel, reinforced the importance of families sharing their narratives.

Bisharo Jama expressed concern about a lack of understanding towards her daughter’s condition within the Somali community. Over a decade ago, her daughter was diagnosed with Rett syndrome, previously classified under the autism spectrum. “She experiences frustration, sleeplessness, and frequent seizures,” Bisharo explained, noting some parents avoid public spaces with their autistic children. She fought to gain acceptance at her local mosque for her daughter, despite the challenges.

At the Maangaar Summit, Bisharo sought resources and solidarity with fellow parents. “This community is incredibly devoted,” she shared with warmth. “You might feel isolated, but being here reminds you, ‘I’m not the only one facing this struggle.’” It’s a powerful realization that fosters connection.