A long-awaited study has confirmed the
fears of Somali residents in Minneapolis that their children suffer from higher
rates of a disabling form of autism compared with other children there.
The study —
by the University of Minnesota, the Centers for Disease Control and Prevention,
and the research and advocacy group Autism Speaks — found high rates of autism
in two populations: About one Somali child in 32 and one white child in 36 in
Minneapolis were on the autism spectrum.
The national average is one child in
88, according to Coleen A. Boyle, who
directs the C.D.C.’s Center on Birth Defects and Developmental Disabilities.
But the Somali children were less
likely than the whites to be “high-functioning” and more likely to have I.Q.s
below 70. (The average I.Q. score is 100.)
The study offered no explanation of
the statistics.
“We do not know why more Somali and
white children were identified,” said Amy S. Hewitt, the project’s primary
investigator and director of the University of Minnesota’s Research and
Training Center on Community Living. “This project was not designed to answer
these questions.
The results echoed those of a Swedish study published last year finding that
children from immigrant families in Stockholm — many of them Somali — were more
likely to have autism with intellectual disabilities.
The Minneapolis study also found
that Somali children with autism received their diagnoses late. Age 5 was the
average, while autism and learning disabilities can be diagnosed as early as
age 2, and children get the most benefit from behavioral treatment when it is
started early.
Black American-born children and
Hispanic children in Minneapolis had much lower autism rates: one in 62 for the
former and one in 80 for the latter.
The study had limitations. The
authors did not examine children directly, but reviewed the 2010 clinical and
educational records of about 5,000 children ages 7 to 9 and made estimates.
All the autistic Somali children in
the study had I.Q. deficits, Dr. Hewitt said.
Even though the city has Asian and
Native American communities, records for so few of those children were studied
that they were not included in the analysis, she added, “but it’s reasonable to
extrapolate that autism rates among them are lower.”
Autism rates vary widely across the
14 communities the C.D.C. follows, Dr. Boyle says. Alabama has low rates, while
Utah’s and New Jersey’s are high.
Generally, says Michael Rosanoff, a
director of public health research for Autism Speaks,
white children are the most likely to have an autism diagnosis, but that may be
because they are more often sent to diagnostic specialists.
Somali parents in Minneapolis have
complained for years that many of their children had autism symptoms — failure
to speak, reluctance to look others in the face, screaming and repetitive
behaviors.
At onetime, 25 percent of the
children in local special education classes were Somali, while Somalis
represented only 6 percent of the student body. While some children back home
had the same problems children everywhere do, parents said, autism was so
unfamiliar that there was no Somali word for it until “otismo” was coined in
Minnesota.
“I feel good, actually,” Idil
Abdull, a Somali mother of an autistic child who was one of the first to demand
an official investigation, said when she heard the results. “I was afraid they
were going to say, ‘We don’t see anything.’ And we know that our kids can’t talk.
“Autism is silencing the kids of a
nation of poets,” continued Ms. Abdull, who has spoken about the issue at the
United Nations. “Whether it’s something in our genes and you add it to
Minnesota snow or what, I don’t know, but something’s triggering autism. My dad
taught me to recite poetry at age 4, and my kid is 11 and he can’t say two
sentences. It’s heartbreaking.”
Dr. Hewitt and Mr. Rosanoff say they
want to see more research comparing Somali children with autism to those
without, including intelligence testing and genetic workups.
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