Autism answers elude Somali parents, researchers

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For the most part, Idil Abdull sees her son Abdullahi as any mother would.

But some days, Abdullahi isn’t able to play, talk or even ask for a potty break. At a time when children are supposed to develop friendships, Abdullahi struggles with simple commands.

On those days, Abdul sees the differences autism has wrought in her son.

Like many Somali mothers, Abdull faces a challenge that many in the Somali community do not fully understand.

Somali parents in Minneapolis are witnessing an increase in the number of autism diagnoses in their American-born children, a trend they’ve never seen in the past.

In 2009, the Minneapolis health department found that young Somali children in public schools are over-represented in autism programs. State health officials, however, have cautioned that these findings do not necessarily mean there’s a higher rate of autism among Somalis.

So far, this anecdotal evidence for a higher rate of autism in the Somali community has not been confirmed in scientific studies.

“Our kids are as American as apple pie. We want our officials to look at autism with a keen eye.” Abdull said.

Autism is a complex physical condition that experts believe presents itself during the first three years of a person’s life, affecting the development of social and communication skills. No two people have the same symptoms of autism.

The condition’s exact causes remain unknown, but researchers are testing various interventions.

Both children and adults with autism typically show difficulties in verbal and nonverbal communication, social interactions and leisure or play activities. Studies have shown that early diagnosis and early treatment are effective in improving autism symptoms.

Abdull has focused attention on the issue of autism in the Somali community, and she’s been a catalyst for research by the advocacy group Autism Speaks.

The organization stimulates awareness about autism and raises funds to help support autism research. It hopes to bring an understanding of the condition — as well as statistics — to support the claims made within and about the Somali community.

The few statistics that do exist are striking.

The Minnesota Department of Health estimates that one in 56 Minnesota children have autism. Of those children, one in 28 is Somali.

In Minneapolis’ early childhood and kindergarten programs, more than 12 percent of the students with autism reported speaking Somali at home, according to the Minnesota Department of Education.

Prevalent problems

Coming from a country where autism is rarely, if ever, diagnosed, many Somali families do not fully comprehend the magnitude or significance of autism. Some parents assume their autistic children are unintelligent or mentally disabled.

Language difficulties pose a barrier, and although many older Somalis speak more than one language, English often isn’t one of them.

Abdull is worried that the complex U.S. health care system presents another barrier.

Some public health officials fear Somali parents are not seeking proper medical care for their autistic children because of misunderstandings about the system. As a result, schoolteachers are often the ones to raise the issue of medical treatment for Somali children with autism.

Conflicting studies reported in the media have also driven some in the Somali community to associate vaccination with autism.

Officials are concerned this has led some parents to avoid vaccinating their children, possibly contributing to a recent outbreak of measles in Minneapolis.

Dr. Abdirahman D. Mohamed, the chief of staff at Axis Medical Center in Minneapolis, said last month he knew of four unvaccinated Somali children who had died from
measles.

Recognizing the urgency of this problem, state epidemiologist Ruth Lynfield said “we strongly urge parents and health care providers to ensure that children have received appropriate vaccinations.”

Abdisamad Ibrahim, an autism researcher at the University of Minnesota, echoed the importance of health awareness and diagnostics for the younger
generation.

“It’s sad that we are in the U.S. where vaccines are available and children are not given the chance to get vaccinated,” he said. “If we are in Somalia it’s understandable, but measles has been eradicated in the U.S. a long time ago.”

For now, mothers like Abdull are wishing for better services for their children and are hoping for a changing dynamic in the treatment of autism.

“[Just] because my son has autism, he should not be seen as a disabled individual but rather as a citizen who will someday pay his taxes and be part of this growing community,” Abdull said.

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