An Outbreak of Autism, or a Statistical Fluke?

[Guest guest]

March 17, 2009

An Outbreak of Autism, or a Statistical Fluke?

By DONALD G. McNEIL Jr.

An Outbreak of Autism, or a Statistical Fluke?

MINNEAPOLIS — Ayub Abdi is a cute 5-year-old with a smile that might

be called shy if not for the empty look in his eyes. He does not

speak. When he was 2, he could say “Dad,” “Mom,” “give me” and “need

water,” but he has lost all that.

He does scream and spit, and he moans a loud “Unnnnh! Unnnnh!” when he

is unhappy. At night he pounds the walls for hours, which led to his

family’s eviction from their last apartment.

As he is strapped into his seat in the bus that takes him to special

education class, it is hard not to notice that there is only one other

child inside, and he too is a son of Somali immigrants.

“I know 10 guys whose kids have autism,” said Ayub’s father, Abdirisak

Jama, a 39-year-old security guard. “They are all looking for help.”

Autism is terrifying the community of Somali immigrants in

Minneapolis, and some pediatricians and educators have joined parents

in raising the alarm. But public health experts say it is hard to tell

whether the apparent surge of cases is an actual outbreak, with a

cause that can be addressed, or just a statistical fluke.

In an effort to find out, the Minnesota Department of Health is

conducting an epidemiological survey in consultation with the federal

Centers for Disease Control and Prevention. This kind of conundrum,

experts say, arises whenever there is a cluster of noncontagious

illnesses.

While there is little research on autism clusters, reports of cancer

clusters are so common that health agencies across the country respond

to more than 1,000 inquiries about suspected ones each year. A vast

majority prove unfounded, and even when one is confirmed, the cause is

seldom ascertained, as it was for Kaposi’s sarcoma among gay men and

mesothelioma among asbestos workers.

It is “extraordinarily difficult” to separate chance clusters from

those in which everyone was exposed to the same carcinogen, said Dr.

J. Thun, the American Cancer Society’s vice president for

epidemiology.

Since the cause of autism is unknown, the authorities in Minnesota say

it is hard to know even what to investigate.

“There are obviously some real concerns here, but we don’t want to

make a cursory judgment,” said Buddy Ferguson, a health department

spokesman. Even counting autism cases is difficult because the

diagnoses are first made by the schools, not doctors, and population

estimates for Somalis vary widely. Results are expected late this month.

Even if the department confirms that a cluster exists, it will not

answer the question why. Still, Dr. Thun said a possible focus in one

ethnic group “increases my sense that investigating it is essential.”

The next step, he added, would be to look at Somalis in other cities.

A small recent study of refugees in schools in Stockholm found that

Somalis were in classes for autistic children at three times the

normal rate.

Calls to representatives of Somali groups in Seattle and San Diego

found that they were aware of the fear in Minneapolis but unsure about

their own rates. Doctors familiar with the Somali communities in

Boston and ton, Me., had heard of no surges there.

“It’s a concern here, but we haven’t done anything to look

specifically,” said Ahmed Salim of Somali Family Services in San Diego.

Shamso Yusuf of the Refugee Women’s Alliance in Seattle said tearfully

that her own daughter had been given a diagnosis of autism, “and I see

a lot of parents who have 5-year-olds who cannot speak.” But no

Seattle study has been done, she said.

Somalis began arriving in Minneapolis in 1993, driven out by civil

war; now their population in Minnesota is estimated at 30,000 to

60,000. The city is welcoming and social benefits are generous, but

many live a life apart as conservative Muslims, the women in head

scarves and long dresses. Many Somali men have jobs as taxi drivers or

security guards; others are accountants or run shops in the mini-malls

catering to Somalis.

Antivaccine activists are campaigning among them, which worries public

health officials, especially because some families go back and forth

to Somalia, where measles is still a significant cause of childhood

death, according to Unicef.

One of the first to raise the alarm was Anne Harrington, who worked in

special education in the Minneapolis schools for 21 years.

In the last decade, she said, “we’ve begun seeing a tremendous number

of kids born here who have the more severe forms of autism.”

Last year, she said, 25 percent of the children in preschool classes

offering the most intensive treatment had Somali parents, while only

about 6 percent of public school enrollment is Somali.

Dr. S. McLellan, a pediatrician, said that when he began

practicing at Children’s Hospital six years ago, he was struck by how

many autistic Somali children he saw.

“They had classic symptoms,” he said. “Really impaired language,

didn’t watch faces, didn’t make eye contact, didn’t communicate with

gestures, just lost in their own worlds. Nobody would mistake it for

anything else.”

Speculation is rampant about possible causes: living conditions in

Somalia or in refugee camps in Kenya; traditional medicines;

intermarriage; genetic predisposition; vitamin D deficiencies due to a

lack of sunlight; and, of course, vaccines.

But each theory has weaknesses.

Most of the children, said Idil Abdull, one of the first mothers of an

autistic child to ask the authorities to investigate, were born here

and have had the same medical care and shots as any child on Medicaid.

It is not a case of misdiagnosis because of language problems; many

have siblings doing well in school.

The Hmong, from Southeast Asia, who also immigrated here through

refugee camps, do not have high autism rates, Ms. Harrington said.

Somali refugees have many illnesses, said Dr. Osman M. Ahmed of the

East Africa Health Project in St. , including tuberculosis,

hepatitis B, depression from the civil war, and vitamin D deficiencies.

But lack of vitamin D is a dubious explanation. Rates of the disorder

are similar among black and white Americans, according to the C.D.C.,

and Somalis, on average, are no darker-skinned than black Americans.

In Somalia, cousins do marry cousins. Globally, according to the March

of Dimes, birth defect rates are highest in Arab countries with close

intermarriage. But Somalia’s birth defect rate is moderate, and autism

is not part of such studies.

In any case, many Somali parents are baffled and scared.

“It’s beyond denial,” said Hassan Samantar, a parent advocate at the

Pacer Center for disabled children. “There was no word for this in

Somali. We’ve seen Down syndrome and schizophrenia, but loosely termed

— our word is more like ‘crazy.’ People are calling it ‘otismo’ or

‘the American disease.’ And some are saying it’s something you did or

your parents did, and the curse is catching up with you.”

Many Somali parents here do not read English or watch American

television, he said, so they first hear of autism only when a

pediatrician suggests testing a child.

Some send their children back to relatives in Somalia.

“They say, ‘There’s more sunshine, there’s less pollution, the food is

fresher because the animal was killed that morning,’ ” Ms. Abdull

said. “They say: ‘My kid won’t talk? Throw him in the middle of 20

other kids, and he’ll talk. They’ll tease him till he has to.’ You

know the way kids run around in Africa? People are so isolated in

their apartments here. They think maybe they’ll snap out of it.”

Antivaccine groups have noticed. In November, J. B. Handley, a founder

of Generation Rescue, which advocates treating autistic children with

wheat- and dairy-free diets, vitamins and chelation to remove mercury,

wrote an open letter to “Courageous Somali Parents.”

He warned them not to trust the state health department and suggested

they slow down their children’s shots and get exemptions to school

vaccination requirements. He also offered to pay for some to attend an

antivaccine conference.

The appeal has had an effect. Many parents, including Ayub’s, now say

that their children’s autism began after seizures that started after

they got shots.

“People in the Somali community have gravitated to that theory, and

many are resisting immunization,” Dr. McLellan said.

But there are also children like 8-year-old Shumsudin Warsame, who

does not speak more than one word at a time, runs in circles and hurts

himself jabbing pens into his face. He was born in Somalia, grew up in

Egypt and arrived here six months ago. He started having seizures

before he was a year old, his father, Abdiasis, said, long before he

had any vaccinations.

To Mr. Warsame, finding something to blame is beside the point. He is

a single parent, and he and Shumsudin were at a health center hoping

to find a part-time home care aide.

“I have a friend from Somalia with three kids with autism, all born in

Minnesota,” Mr. Warsame said. “I need help; we all need help. I don’t

see a lot of people trying to help us. It’s better than it was in

Egypt or Somalia, but it’s not what I expected.”