Report : Higher rate of Somali kids in Mpls autism programs

Knows single words
Abdullahi Abdull strung together simple sentences as a young toddler. Then he suddenly stopped talking. A doctor diagnosed him as having autism when he was 3. Now at age 6, after intensive therapy, he can say single words.
MPR Photo/Lorna Benson

Somali parents of autistic children were so worried about what they were seeing that they asked the Health Department last year to look into the prevalence of autism in their population.

The agency couldn't do a true population prevalence survey because they didn't have access to medical records for all of the children. But the Department was able to examine Minneapolis school records.

Noticed autism problem among Somalis
Idil Abdull contacted state and federal health officials after noticing an unusually high number of Somali children in Minneapolis school autism programs. Her son Abdullahi has autism.
MPR Photo/Lorna Benson

That data gave the agency enough information to estimate the "administrative prevalence" of the disorder. In other words, the number of children who receive autism services from the school district.

Commissioner of Health Sanne Magnan says the findings validated the Somali concerns.

"What Somali parents were seeing in the classrooms with their eyes, that there was an increased number of Somali kids getting services in special education classes for autism spectrum disorders, was real. What they saw was real," said Magnan.

The Health Department only looked at school records for 3 to 4-year-olds. Over a three-year period, from 2005 to 2008, the proportion of Somali kids receiving autism services was as much as seven times higher than non-Somali children.

Overly focused
Ahmed Maalin was diagnosed with autism when he was 2 years old. His mother Istahil says a single toy part can capture his attention for hours. But after intensive therapy he's learning to interact more with his family. He can now speak in simple sentences.
MPR Photo/Lorna Benson

Still, Magnan says the finding does not prove there's an increased incidence of autism in the Somali population.

"It could mean they're being referred more often to the Minneapolis special education parts. It could mean that other children are not being referred as much," said Magnan.

Anne Harrington coordinated one of the autism programs for the Minneapolis Schools until last year. She is not surprised by the Health Department's findings. "You almost have to see it to understand how dramatic it is," she said.

Harrington says she noticed a steady increase in the number of autistic Somali children in the eight years that she coordinated the program.

Early intervention
Istahil Maalin wants Somali parents to know that autistic children have a much better outcome if they receive therapy early. She got treatment for her son when he was 2 years old. Today, he is able to talk and he is receptive to touch.
MPR Photo/Lorna Benson

"Last year, in our classrooms that are for children 3 to 5 years old, that have the more intensive forms of autism and need the more intensive services, one-fourth of those children were Somali," said Harrington.

Abdullahi Abdull is one of the children in the program. His mother Idil was one of the Somali parents who urged the school district and the Health Department to investigate.

A doctor diagnosed Idil's son with autism when he was 3 years old. He's now 6.

"He can say maybe one word, you know just request something like a Coke or juice," she said. "Maybe a year ago, anything that was coming out of his mouth was just crying. But now he's able to imitate almost any sound."

Witnessed Somali autism surge
Anne Harrington coordinated the most intensive autism program offered by the Minneapolis schools. She says one-quarter of the kids in the program were Somali. She says that's an unusually high percentage for a group that has a relatively small population.
MPR Photo/Lorna Benson

Abdull says there's a lot of fear in the Somali community about autism. She says many wonder if they are especially susceptible to the disorder.

"We speculate -- is it the environment? Is it low Vitamin D? Is it predisposition, something genetic going on? We're not sure," said Abdull. "But our job as parents is to raise awareness. and leave the cause and the cure to the scientists and the research world."

There is no word for autism in the Somali language. And as far as Abdull knows, there are no cases of autism in Somalia.

"A lot of families have returned their children back home, hoping it's something going on in Minneapolis or this country, and now it's very famous at home," said Abdull. "A lot of people at home are saying, 'This is the disease that makes children silent.'"

There is no evidence yet to suggest that autism is more prevalent in Somalis. The Health Department says its administrative prevalence study is just a first step in trying to determine what's going on in the Somali community.

In the meantime, Adull and others have formed the Somali American Autism Foundation. They hope to help other Somali parents navigate the range of autism services and therapies that are available.