Tomorrow, a few hundred very concerned citizens of
Minnesota will gather to discuss a baffling and
heartbreaking riddle: Why is the reported rate
of autism among children of Somali refugees so
alarmingly high (now an estimated 1-in-28
schoolchildren)?
When I first heard about this phenomenon, which
Somalis call the "Minnesota Disease," my reporter's
instinct told me it could be a very big story; that a
key piece of the puzzle that is autism might well lie
within the bloodstreams of these poor children of the
Twin Cities - whose families had already suffered
through so much.
If it can be demonstrated that US-born children of
Somali refugees are more prone to autism than the
other kids of Minneapolis - or Somalia - then it
shouldn't take too long to discover what it is about
them (their genes) that clashed so terribly with the
way they were conceived and raised (their
environment).
It won't explain every case of autism, of course, but
it might open new doors of understanding and knowledge
that can be applied to combating autism worldwide.
The daylong conference on Saturday is a tribute to
progressive public health and a responsive local
government (plans include Somali translators, Somali
food, breaks to allow time for Islamic prayer, and
child care). The meeting is sponsored by a variety of
Somali, autism and other community groups, as well as
several State and City agencies, including the
Minnesota Department of Health.
"The Somali community expressed a need for information
on autism, and our duty is to respond to that, to
provide as much information as possible, and in a
culturally context," said state health department
spokesman Doug Schultz. "The concern in the community
is real, and if they have the perception that there is
a high rate, then we need to talk about that."
But is there really a "high rate?" A written survey I
conducted with some 25 refugee parents of autistic
children certainly revealed their strong belief that
there is - and nearly all of them blame the vaccine
program of their adoptive country.
In August, the online newspaper MinnPost
first reported that 12 percent of kindergarten and
pre-school children with autism in Minneapolis speak
Somali at home, and more than 17 percent of the kids
in the early childhood autism program are Somali
speaking.
The Minneapolis Star tribune published other
staggering figures: Among Somali students in the
district, 3.6 percent had autism - a rate of
360-per-10,000, (or 1 in 28). The paper said
this was about twice as high as the already burgeoning
district average of some 180-per-100,000 kids (or 1 in
56), and more than five times the national rate of
66-per-10,000 (1 in 150).
Virtually all of the children of Somali refugees were
born in the United States, and they appear to be among
the most severely affected children with autism in the
district: Last year, one-in-four children in
the preschool class for the most severe cases was
Somali.
Reports of elevated autism rates among
children of immigrants is nothing new. A
small study this year showed that Swedish-born
children of Somali immigrants to that country were far
more likely to have autism than the general
population, (Somalis there call autism the "Swedish
Disease"), and another small study in 1995 found an
autism rate of 15% among children in one Swedish town
born to mothers from Uganda - 200 times more than the
national average.
Higher than normal autism rates among children of
immigrants have also been reported in Ireland, the UK
and several cities in North America, especially
Montreal.
Meanwhile, none of the refugees that I
surveyed had ever heard of autism back in Somalia,
where there isn't even a name for the disorder.
In fact, no one had ever seen nor heard of a single
child who displayed any of the common symptoms of
autism -- though a few did report knowing kids with
speech delay that eventually resolved itself.
Not everyone is convinced that there is a problem,
however.
"These reports are interesting and need further
review, but you don't just take something off the news
as facts," cautioned Judy Punyko, an epidemiologist
for the state department of health. "We need to obtain
the actual data and analyze it, so I am not sure there
is much of a story here at this point."
Punyko has assembled a team of experts to determine if
the Somali autism rates are in fact higher than
average in Minneapolis, and she was expected to
release at least preliminary results at Saturday's
meeting.
But on November 12, Dr. Punyko sent me an email saying
she is not able to present any results yet, "only
study aim, objectives, and progress to date. I am
still in the process of gathering existing data and
this is taking a lot more time than I had
anticipated," she wrote. "These data are tough to work
with."
The delay will not be welcome news to any of
the Somali parents I spoke with. They know that,
without proof that their children are being afflicted
more than others, officials will not intervene to
investigate.
One mother (who asked not to be identified due to the
tremendous stigma of autism among Somalis), first
approached state and city officials in April of 2007,
beseeching them to look into the apparent problem. It
wasn't until local reporters started snooping around,
the mother said, that government stepped up to
respond.
The parent refugee-activists even secured a
teleconference meeting with health staffers in the DC
office of Minnesota Senator Norm Coleman. They told
the Somalis that, if the prevalence was shown to be
higher in their community, they would urge the CDC and
other Federal agencies to "look under every rock" to
find out why - including environmental factors like
mercury, thimerosal and vaccines.
Many Somali parents began to suspect vaccines
as a possible cause on their own, and well before they
encountered any American media or autism groups who
could put the idea in their head.
In fact, one of the most obvious "environmental"
differences between Minnesota and Somalia is mass
vaccination (another is sunlight, but more on that
later).
There are an estimated 15,000-40,000 Somalis living in
Minnesota, which has the largest Somali population
outside of East Africa. Most fled during or after the
1993 phase of the bloody Civil War in that country.
Most spent years in often wretched refugee camps in
Kenya and elsewhere, waiting for a chance to emigrate
to Europe and North America.
Many got their chance in 2000, when the majority of
Somalis arrived in Minneapolis, hoping to finally
build a new life in peace and dignity.
Along the way, vaccines became an almost routine part
of their life: They were given in the camps, they were
given before leaving Africa, and they were given in
the first year of arrival in the US (which requires a
series of 10 vaccinations for all refugees, including
women of child bearing age - many of those vaccines
contain thimerosal).
Once they arrived in Minnesota, most refugees were
welcomed by a progressive "Blue" state with a good
public health infrastructure and a bureaucracy ready
and willing to help. Refugees were given about a year
or so of free medical and dental care, and special
effort was made to ensure full compliance with the
childhood vaccine schedule (though many mothers failed
to keep well-baby visits, requiring lots of "catch up"
vaccinations when they did bring their children in to
the pediatrician).
Of the 25 refugee mothers who answered the
questionnaire, most were vaccinated in refugee camps,
and all but two were fully vaccinated after arriving
in the US. About a third reported receiving vaccines
while pregnant or shortly before becoming pregnant.
When asked what they thought was causing autism in
their community, 22 respondents said that vaccines
were at least partly to blame, while two were unsure,
and only one said vaccines were uninvolved.
Many parents told me the same story of regression I
have heard a thousand times before.
"He met all the normal milestones until he hit 18
months," lamented Abdulkadir Khalif, speaking of his
three-year-old son with autism. "He was a beautiful
baby, running around, saying a few words, until about
the winter of 2006, right when he got his MMR
(measles-mumps-rubella) shot. He got sick and we went
to the hospital, and he stopped talking immediately
around that time."
"Do I know it was the vaccines?" Khalif asks. "All I
know is he stopped talking right around the time of
those shots."
Neither Khalif nor his wife (who was given a
thimerosal-containing flu shot while pregnant, even
though the label instructed the doctor to administer
the shot during pregnancy, "only when medically
necessary"), had ever heard of autism until the day
their son was diagnosed.
Khalif says, it is "not possible" that autism could be
this common in Somalia. "I've been living with it on a
daily basis, with my own child. And I lived in Somalia
and Kenya for a long time. If it was this common, we
would have had a name for it, and we don't. That tells
me it does not exist."
"And these symptoms? I had never seen anything like it
before. We have names for mental retardation or Down
syndrome. But the mannerisms, the loss of speech, the
tantrums and violence and running out of the house
that comes with autism - I think we would have noticed
those things. But we've never seen them before in
Somalia or Kenya."
Hodan Hassan, mother to four children including
four-year-old Jenny, who has autism, said she had been
"a little lax and lazy" with vaccinating her first two
kids, "and the doctors got mad at me." With Jenny, she
vowed to get all shots on time (and dutifully got the
flu shot while pregnant). But there seemed to be a
problem with the record keeping, because Jenny was
clearly over-vaccinated (for example, she received
five Hepatitis B shots, when only three are required).
Soon after giving birth, Hassan started work at a
hospital, where she received several mercury
containing vaccines, even while breast feeding Jenny.
Jenny had several terrible, feverish reactions to some
of her vaccines, twice requiring visits to the ER,
where she was given IV fluids and Tylenol.
On Valentines Day, 2006, Hassan brought Jenny in for
her 18-month well baby visit, right on time. "she was
saying 'mommy' and 'daddy' and 'juice' and 'go, go
let's go!'" Hassan recalls. "She was a very happy and
attentive baby. She would look at you when talked to
her, she would come when you called.
Then Jenny got five vaccines at once (M-M-R, Prevnar
and chicken pox) at the doctor visit. She spiked a
fever and returned to the hospital. "She never spoke
again," Hassan said. "It was all gone right after
those shots. I know the doctors don't believe it. They
think we must be crazy. But these are our kids, and we
were there when everything happened to them. The
doctors were not."
Many of the parents I spoke with said they
plan to stand up and speak out at the meeting, where
Khalif and Hassan are both scheduled panel members.
"I have gathered information on 149 Somali families in
Minneapolis with autistic children, and I plan on
asking the experts why it is so much," Hassan said.
But she doesn't expect a ready answer. "I
think they will try to cover it up at the meeting,
avoid the issue, and say 'It is not what you guys
think, you can trust us, this is not what it is,'" she
said. "But that is not acceptable. Word of
mouth went out and people are panicking, and they
don't know who to trust. One American doctor told me
he will not vaccinate any of his own kids, but has to
vaccinate all the others. You have no idea what kind
of message that sends to our community."
Khalif also plans on posing tough questions.
"I am going to make all those education and health
officials feel very guilty," he said. "Where did this
come from? This is a disease that's been acquired by
our kids here. In each and in every case, all the
children, with one exception, that have been
identified with autism were born in this country. I
want them to tell me directly that the vaccines are
safe. I want someone to stand up and say that. And
then, I want to ask that same person two years down
road the same thing, and see what the percentages are
like."
Khalif also wants to propose "a rescheduling of the
vaccines for our Somali children, because I think
there is something in our immune system that cannot
handle that number of vaccines at one time. The rate
is so high, that something will be found in our genes
or systems. Science now has a window to find out the
actual cause, and therefore the remedy, for autism."
Some doctors and researchers in Minneapolis that I
spoke with were extraordinarily sympathetic toward the
Somalis. "Vaccines have to be playing a role," said
one very prominent pediatrician and researcher, who is
working quietly behind the scenes to change attitudes
at the University of Minnesota and elsewhere, and did
not want to be named.
"Maybe if we start talking about the individual toxins
in vaccines, and not the vaccine program as a whole,
others in the medical profession will find it easier
to come around," the doctor said.
Another local doctor, who did speak on the
record, was willing to speculate on one possible
variable that might make Somali kids more prone to
autistic regression - with or without vaccines:
Vitamin D deficiency.
Dr. Gregory A. Plotnikoff, medical director for the
Institute for Health and Healing at Abbott
Northwestern Hospital, said a colleague had noticed an
"exceedingly high" rate of morning sickness among
pregnant Somali women in Minneapolis, often requiring
hospitalizations.
The doctor began checking Vitamin D levels and found
that, on average, they were far below what is
considered to be normal and healthy.
Somalis, he said, may start out with naturally low
abilities to produce vitamin D from sunlight, (as is
the case with many people with Middle Eastern blood in
them). That is compounded by the fact that
dark-skinned people require far more sunlight to
produce vitamin D than light-skinned people and, when
Somalis move to areas of higher latitude, with far
less sunlight - their vitamin D stores may be
virtually depleted, at least for part of the year.
"Vitamin D is crucial for normal brain development,
because there are receptors for it throughout the
brain," Plotnikoff said. "Vitamin D also plays a role
as an anti-inflammatory agent and, besides cutting
down on inflammation, it increases concentrations of
glutathione, which better supports the brain's
capacity to handle heavy metals and oxidative stress."
Glutathione has been found to be low or
depleted in many children with autism. A lack of
glutathione would make children more vulnerable to the
effects of mercury and other heavy metals.
"Another problem is that Tylenol depletes glutathione,
and regretfully, most kids who get a shot also get
Tylenol," Plotnikoff said. "It's routinely given
without considering that it can increase the risk of
heavy metals, like mercury, causing oxidative injury
in the brain."
"Glutathione has antioxidant properties, and it also
chelates, or removes heavy metals in the body. We want
a lot of it around. We need it, and we depend upon
it," he added.
So, could there be a possible connection
between vitamin D deficiency, glutathione depletion,
heavy metal accumulation and autism?
"It's a hypothesis that absolutely needs to be
tested," Plotnikoff said. "Vitamin D deficiency is
crucial to study, because of its many roles in normal
brain development -- including the capacity to handle
oxidative stress and handle heavy metal loads. The
data we have now can't say if this s the case, but it
is a compelling hypothesis that deserves national
attention."
"My sense is that autism is likely to be a result of a
combination of many important factors," he continued.
"The gift that the Somali community is giving us is
about a significant awareness of the role of low
vitamin D levels and other environmental issues,
including immunizations and heavy metals, in autism.
Severe Vitamin D deficiency could be what is behind
all this. And that is what the Somali community did
for us: They get no sun in Minnesota, and they have
extremely low levels of vitamin D."
Finally, vitamin D deficiency in pregnant
animals can lead to "dramatic" defects in
mitochondrial function in offspring, according to at
least one study. The role of mitochondrial
dysfunction and autistic regression is only now
beginning to be explored. But some researchers believe
that poor mitochondrial health (perhaps exacerbated by
vitamin D deficiency?) is a precursor to autistic
regression in at least one subgroup of children.
All of this, of course, is speculation. There is no
proof that any Somali autism cases were caused by
vitamin deficiency, lack of sunlight, mercury or
vaccines. But if you look for major differences
between life in Somalia and life in Minnesota, you
will find that one has lots of sunlight and very few
vaccines -- and the other has less sunlight, but lots
of vaccines.
Is it possible that vitamin D deficiency caused
glutathione depletion and mitochondrial damage to
these Somali children, setting them up for regression
into autism after receiving multiple simultaneous
vaccines containing heavy metals (as was the case in
the famous Hannah Poling Vaccine Court claim)?
No one knows. And sadly, some refugees are not waiting
around for US doctors to find out.
"Some autism families have returned to
Somalia," said one mother, who did not want to be
identified. "They were angry and disgusted with the
United States. The nation that offered them
refuge was the same nation that made their children so
sick," she said.
"They think that, by returning home, maybe they can
make their children better."