By Anne Dachel
In the early 1990's, they first came to the Twin Cities. Thousands of refugees fled from civil war in Somalia and settled in Minnesota, believing that they had left tragedy behind them in Africa. What they never expected to find in their new country was a mysterious disorder that would strike their children at an epidemic rate.
Last summer, stories about the explosion in autism among American-born Somali children got the attention of the U.S. autism community.
The numbers are staggering. July 25, Amelia Santaniello at WCCO-TV reported that autism was something unknown back in Africa. Santaniello cited autism specialist for the Minneapolis schools, Anne Harrington. 'It's so glaring here in Minneapolis, I couldn't not see it.'
Harrington should know, she's been working with autistic students for over 20 years.
Her numbers are scary.
While Somali children make up only 6 percent of the student population, they are 25 percent of those in the autism special education program. Harrington pointed out that these kids are also affected with the most severe forms of the disorder.
Harrington was also interviewed by Reuters reporter Elizabeth Gorman. In "A mysterious Connection: autism and Minneapolis' Somali children" on July 24, Harrington talked about the role vaccines might play in this crisis. 'They're given more [vaccines] than we get and sometimes they're doubled up. Then their children are given immunizations. In Somalia, their generations have not received these immunizations, and then suddenly they're getting just a wallop of them in the moms and then in the babies. That's certainly a concern that's been expressed to me by the Somali population.'
In another part of the Reuter's piece Harrington was quoted saying, 'It's got to be preventable.'
August 24, the Minneapolis Star Tribune ran the story by Maura Lerner, "Autism statistics alarm Somalis." Lerner interviewed autism medical expert, Dr. Dan McLellan, who made it clear that this is a serious problem for the Somalis. He said 10 percent of his patients are Somalis. McClellan believes 'there's something up with this,' but he admits he can't explain it.
In the same piece, Judy Punyko from the Minnesota Dept. of Health was cited as the head of a newly formed study group that would look into autism in the Somali population. She said, 'We want to understand the numbers. That's my goal,' meaning that they didn't know for sure just how bad the rate is for the Somalis in Minneapolis schools. She further said, 'We have a condition that has no known cause and there is no cure. And people are looking to us to provide them with answers.'
On November 15, the public gathered to get those answers. Officials addressed autism in the Somali community with a day-long forum held in south Minneapolis. Representatives from the Minnesota Dept. of Health, the public schools, the Somali community, and various autism groups were in attendance.
A handout told the audience, "The primary objective of this Forum is to raise awareness in the Somali community about developmental delays in children with specific emphasis on autism and to engage the community."
Among other things, attendees would "learn concrete facts about autism. . . and connect to appropriate screening, assessment, and treatment services."
What I found was an attempt by public health officials to downplay the seriousness of the Somali situation and to ignore the demand for answers from the parents of affected children. Most of all, it was used as an opportunity to publicly deny any connection between vaccines and the outbreak of autism among the Somali children in Minneapolis.
Dr. Sanne Magnan, Commissioner of the Minnesota Dept. of Health opened the meeting by talking about available services. She then addressed the vaccine issue, making it clear, "There is no association." She cited the CDC website as the official source for the facts about vaccine safety. Next to clear air and water, she told us, vaccines are the greatest modern improvement in health care. She was obviously unwilling to consider the claims of parents who believe vaccines caused their child's autism. She told us, "Those are the facts," which meant of course, that anything challenging her denial was relegated to the opinion category.
Magnan called autism a "complex disorder" and she said, "For every complex problem, there's a simple solution-and it's usually wrong."
Magnan wasn't available to respond to parents because she had to be at another meeting immediately after her talk.
Other education and health experts talked, noting the services provided for children with autism. Among the speakers were three of the same people covered in the Somali-autism news stories back last summer.
Anne Harrington was there but she didn't talk about Somalis being over-vaccinated like she did in the Reuters piece from July. Nor did she again say it's preventable. Instead, she talked about the help the schools provide and she made a strange comment about how "reassuring" it was to see that the rise in the autism population in MN was the same as the rest of the country.
Dr. McLellan was heard from again in the first panel to present information. His main message didn't sound anything like what he had said in the Tribune. He wasn't concerned that there was 'something up with this.' Instead, he knew all about autism and he wasn't worried. He wasted no time in getting out the message that autism is nothing new. He told us about the "long history of autism' which went back to the 1500's. His position was clear: we've always had kids like this.
McLellan noted that 1943 was the beginning of the modern understanding of autism. No longer was autism seen as possession by the devil or as a mental illness. According to the doctor, genes are to blame. "Genes program our brains" as children move from one stage of development to another. He had a generalized definition of autism which was something about kids with autism having "major difficulties with how they cope with life."
Only once did vaccines get a mention. McLellan told us that the vaccine schedule has been around since the 1960s and we haven't had any problems.
Judy Punyko, epidemiologist for the MDH, was also on one of the panels. She talked again about her big project: a major prevalence study to look into the Somali situation. We were cautioned that this would "not be an incidence study." Punyko has been working all these months to get the numbers from the schools so the MDH could determine if there's been a real increase. This was happening because "last summer there were some concerns" about the number of Somali kids suddenly diagnosed as having autism. The study would find out if there are really more kids or if it just seems that there are. "Are there a lot of Somali kids with autism?" There might be. There might be even lower numbers among the Somalis than the general population. This study would tell us.
Punyko warned us that her study wouldn't however tell us what was causing autism. It will also take several months to gather data and determine the results. She advised us that she'd have her findings in March.
The person who had the most to say about vaccines and autism was the woman in charge of the vaccine program for the Dept. of Health, Kristen Ehresmann. She's also the mother of a son with autism. She assured parents that she understood their concerns.
Ehresmann told us about the life-saving benefits of vaccines. She also noted that next to clean water, nothing has more beneficial for the health of our kids than vaccines. She warned us about kids dying from vaccine-preventable deaths if parents don't vaccinate.
She had the answers about vaccine safety. She wanted us to know, "Vaccine safety standards are higher than for any other drug." Many studies are done before vaccines are licensed.
Regarding thimerosal in vaccines, she said that it's been used since the 1920's. Most Americans over the age of six received thimerosal in their vaccines and there haven't been any problems.
Ehresmann announced that since 2002, no vaccines have contained more than a trace of thimerosal, except for influenza vaccines.
Even after thimerosal was removed, autism rates have continued to climb and this is further proof that it's not related to autism, according to Ehresmann.
Ehresmann believes it's a coincidence that some children regress into autism following vaccinations. In response to one question about immigrants getting repeated vaccinations upon entering the U.S., she said "It would be okay."
When answering a question about thimerosal, Ehresmann made the remark that there's "a small amount of mercury" in thimerosal.
In my opinion, the best speaker of the day was in the last panel. Abdulkadir Khalif, father of a three and a half year old year old son with autism, addressed the vaccine controversy. He stated that if autism's always been around, "it's not what I see in my child." He told us about his belief that components of vaccines are the trigger for autism. He received resounding applause when he announced to the crowd that the cause and the cure for autism would be found. (This was something that wasn't said by MDH officials that day. Instead, we were simply told by them that autism is a lifelong disability with no known cause or cure.)
During the lunch break, I had the opportunity to sit down with several participants to get their perspective on the day. Two parents, both fluent in English, gave me their opinion.
One was the end speaker Adulkadir Khalif. He told me about his son, Abdimalik, who was normally developing, but following routine vaccinations, regressed into autism. His bright, verbal little boy suddenly stopped talking or recognizing his father. Khalif came to this forum with plenty of questions, but he got no answers that day. He told me that there was nothing new in what the speakers had said. He commented that Somalis know how "to Google" for information too. He believes that officials are simply in denial. To get a true picture of what's happening, he said they need to focus on who got sick. Are Somali children who have autism only the ones born in the U.S.? If that's true, then something here is affecting children.
Among the parents I talked with was a young mother, Hodan Hassan, who said that officials have to address concerns about the vaccine schedule so kids don't get so many so soon. So far they've only said they "will consider" this action. Later she sent me an email about the day and told me, "It did not go the way I thought it will happen. I know now that we were not even respected."
Khalif also wrote to me about his reaction. He told me that the parent panel, where he talked about the link to vaccines, was purposely put at the end. Speakers like Health Commisioner Magnan, pediatrician McClellan, and chief of the immunizations section at the MDH, Ehresman, had all left by that time.
To the Somali mother who felt that they weren't shown respect at this forum, I can only say that it's nothing new and it's not because they are a newly arrived immigrant group.
I couldn't miss the similarity between how MN health officials are addressing the Somali autism crisis and how the Institute of Medicine reported their findings in 2004 as well as how the CDC handles autism.
Minnesota state epidemiologist Punyko is still unable to give us a definitive answer about autism among Somali students but she hopes she'll know something by March. This is what the autism community is used to. The CDC has been counting U.S. children with autism for years and they still don't know if there are more of them or if they're just the result of "better diagnosing" and no real increase at all.
When the IOM Report was released in 2004, it gave vaccines a clean bill of health. They have no connection to autism. All the important studies said so. It was supposed to end the controversy, but it's now the most heated issue in medicine. The MDH made a impressive showing for the Somali community. They assured people that vaccines couldn't be the reason that they now had all these disabled children to care for. Officials could talk about services and support groups but that's not why parents came to the meeting. They wanted answers and there were none, just as the IOM Report had nothing worthwhile for parents.
Minnesota health officials may think that they've addressed the issue but nothing was settled. What's happening in the Somali community in Minneapolis is happening everywhere and authorities can't continue to pretend that it's not. As a nation, having so many disabled children that no one can explain is a prescription for disaster. As I'm always saying, show us the adults with autism at a rate we see in our children. So far, no one has ever been able to produce the studies on autism among adults. All the officials at the Minneapolis meeting who showed no alarm, no sense of urgency over the reported autism rate of one in every 28 Somali schoolchildren, can't point to a similar rate of autism in Somali adults. That should call all the safety claims into question. That should be scaring everyone at the Minnesota Dept. of Health.
ANNE DACHEL IS MEDIA EDITOR OF AGE OF AUTISM.