Fleeing civil war in his native Somalia, Liban Ali arrived in San Diego in 2001. He found peace, employment, a better life — and a disturbing mystery.
“Soon after our daughter was born, we found that something was wrong with her,” said Ali, 43, a cabdriver who lives in San Diego’s El Cerrito neighborhood. “It was scary.”
Autism has no known cause or cure and is associated with a range of symptoms, from repetitive behavior to difficulty communicating and understanding social cues. This lifelong condition, usually diagnosed in early childhood, affects about one in 88 Americans.
Among Somali immigrants, the prevalence seems much higher.
In 2013, the Somalis of Minneapolis — the largest East African population in the U.S. — were studied by the Centers for Disease Control, the National Institutes of Health and Autism Speaks, a nonprofit. In this group, autism was diagnosed at a rate of one in 32 children, more than double the national average.
Why?
“That’s the million-dollar question,” said Michael Rosanoff, Autism Speaks’ director of public health research. “There’s something going on in the prevalence of autism within that community.”
No study has examined San Diego’s 10,000 Somalis, the nation’s second largest population. Community leaders insist autism is widespread here, too. “There was a huge need for an autism program,” said Najla Ibrahim, director of health and wellness for Somali Family Service of San Diego. “Families were fearful of being stigmatized, shunned by the community.”
While Ali shared those fears, he overcame them — and helped many others do the same. As head of the San Diego Somali Autism Awareness Initiative, Ali will be saluted Wednesday night at the third annual OceanLeaf Awards Ceremony, honored for helping families cope with this condition.
“We understand the situation, the struggle, what they are feeling,” Ali said. “Because I was there.”
No word
Wednesday night’s gala, sponsored by Somali Family Service, focuses on people who have helped East African immigrants succeed in American society. Honorees include Dr. Maria Lourdes Reyes, the director of U.S. and border programs for Project Concern International; Wendell French, a Wells Fargo Bank vice president; Bob Montgomery, executive director of the International Rescue Committee’s San Diego office; and Lenore Lowe, executive director of Nonprofit Management Solutions.
Imam Taha Hassane of the Islamic Center of San Diego will receive the “Spirit Award,” while two “Emerging Leaders” will be highlighted: Mohamed Ahmed, from Communities United Reviving East Africa, and Ismahan Abdullahi, of the Muslim American Society of San Diego.
“This is a great event,” said Ahmed Sahid, president/CEO of Somali Family Services. “We are recognizing individuals who give so much to our community but often times are not recognized.”
Including the “Volunteer of the Year,” Liban Ali. “Liban,” Ibrahim said, “is kind of our local expert.”
His expertise was acquired with time and some pain. It wasn’t until 2007, when his oldest daughter was diagnosed, that Ali had heard of autism.
“We don’t even have a word for it in Somali,” Ibrahim said.
He scoured the Internet for information. He visited the San Diego Regional Center, an agency that assists people with disabilities. With other parents, he formed a support group. Two years ago, this group was adopted by Somali Family Services.
Now Ali’s Initiative hosts monthly forums where guest speakers discuss everything from special education to nutrition, from the psychology of autism to the latest research on its causes. (One theory in the Somali community blamed autism on the American diet’s use of cow’s milk rather than camel’s milk. Experts refuted this, as well as the claim that it is linked to vaccinations.)
In this tight community — “Everybody is in everybody’s business,” Ibrahim said — some worried that this was an American affliction, unknown in the old country.
Alan Lincoln, a psychologist and occasional Initiative speaker, is not surprised that autism is rarely diagnosed in Somalia. “When you are in the middle of a war, with horrible, horrible things going on all around you,” he said, “developmental issues are not what you focus on.”
Early intervention
The Minneapolis study did not pinpoint a reason why Somalis are diagnosed with autism at such high rates, but Rosanoff noted how quickly information speeds across Somali enclaves.
“It might be the case,” he said, “that this community is better at taking advantage and accessing medical care than other ethnic groups.”
While Ali still meets families who fear this diagnosis will stigmatize their child, he stresses the benefits of early intervention. Of his five children, the oldest and youngest are autistic. His oldest child was diagnosed at the age of 5; the youngest, before she turned 2.
“She was lucky she received all the therapy at an early age,” he said. “The sooner you find this, the better it is for your child — the outcome will be a huge difference.”
OCEANLEAF AWARDS
When: 6 to 9 p.m. Wednesday
Where: Four Points by Sheraton, San Diego, 8110 Aero Dr., San Diego
Tickets: $120 per person
Information: Somali Family Services, (619) 265-5821
