By David Kirby
The daylong Somali autism forum on Saturday in Minneapolis was a wonderful experience, mostly because I got to meet so many smart, dedicated, passionate parents who are fighting for their kids in a place that could not be more different than their homeland.
Like most of the people I spoke with, I think the meeting was a mixed bag – the organizers are to be commended for pulling off a complicated day – in two languages no less – that clearly required great planning and coordination.
They also provided detailed information on a number of autism-related services available to families in the Twin Cities area.
On the other hand, many parents felt like the forum was more show than substance – and several expressed disappointment and frustration that public officials did not take their concerns – especially about vaccines – more seriously.
What follows is a summary of my own notes, plus reactions from a few of the parents who took part in the forum.
Dr. Sanne Mangan, Minnesota’s Health Commissioner, kicked off the proceeding with a brief statement that reassured the 80 or so Somali parents at the meeting that, “Today is the start of a dialogue, of listening to your concerns and frustrations, and looking for solutions together.”
That sounded nice, of course, but most parents in the room wanted to know what was making their kids so sick, and they wanted to know why so many children had seemingly regressed into severe autism, directly after being vaccinated.
The Health Commissioner had clearly anticipated these concerns, but instead of listening, she read a statement from the CDC website: “The weight of the evidence indicates that vaccines are not associated with autism,” she said, and then added rather cryptically: ”Those are facts; you have to make your own opinion about the facts.”
It was an odd statement, which seem to be saying: “We know the truth; You people can wallow in your own superstitions all you want.”
Meanwhile, parents were told that autism was nothing new, that it was genetic, that it was God’s will -- and some children’s destiny.
“Autism has a very long history, it is not just brand new. From as long ago as 1500, there are descriptions in the literature about people who probably had autism,” said Dr. Dan McClellan in what apparently was an attempt to be reassuring.
“There have been many different explanations given to account for autism,” he continued, “Possession by a devil, a mental illness, and maybe 50 years ago, we started to see it as a developmental problem.” But today, “Most brain scientists see autism as a condition,” he said, where “genes program different parts of the brain” to grow and develop abnormally.
Soon after, state health department epidemiologist Judy Punyko told parents something they did not want to hear: She had zero information on the actual prevalence of autism among Somali students in Minneapolis.
Punyko had pulled together a team of specialists in August to determine exactly how many Somali students attended school in the Minneapolis schools and, among them, how many are currently receiving educational services for autism. Most parents expected that she would have at least some preliminary numbers, but she did not.
“This is a very difficult and complex topic to talk about, and so I plan to give you a big picture overview,” Dr. Punyko said to a room full of blank stares. “Imagine the complexity of a child’s behavior. The assessment and diagnosis of ASD is based largely on the observation of behaviors, and we need to obtain and find data that accurately describe these behaviors, so this is a very complicated data set.”
Part of the problem is that the schools evaluate students and determine which ones will get autism services, a decision that is not based solely on medical diagnoses. The criteria that are applied for identifying students seeking services may be different for different children, she indicated.
Even so, the requested educational data has not yet been delivered to Punyko’s team. “We met with Minneapolis Public Schools and asked them to help us get the data to solve this problem,” Punyko said. But the figures will not be made available until December.
Meanwhile members of the team are meeting with local health and education officials, “to learn more about the system of identifying children who have autism.” They have also consulted with the CDC “to help us plan this study” and to help, “determine definitions and identify other sources of data that may help us understand this problem.”
“I want to say a bit about results; even though we don’t have any results,” Punyko said to awkward laughter.
The prevalence study, whenever it’s completed, “could tell us one of three things,” she said: Compared with other children in Minneapolis, there may be a larger number of Somalis with autism; there may be a smaller number of Somalis; or, “we might not see any differences between children who are Somali and not Somali.”
When the results do come in, probably some time in March, “We will write them up in a report with next steps and recommendations,” Punyko said, “this might mean that we need to conduct more research studies and MDH will help organize these studies if we need to do them.”
And if they do find higher than normal rates? “We will organize other researchers and physicians to help Somalis families with this problem, and to try to understand it,” Punyko said, without offering specifics.
Next came some written questions from the audience.
Does autism exist before a child is born, or after?
“We don’t know the perfect answer to that yet,” Dr. McClellan said. “The best answer is it probably starts before a child is born, but we may not be able to notice until the child is older, perhaps one and a half to two years.” But, he added, “I don’t want to emphasize too much that starts before birth, because we still have a lot to learn about it."
Next, one of the Somali doctors in attendance told the audience that autism is not “a mistake of parents, nor is it a punishment because of the crimes of the parents.” It is instead, “destiny that was meant to happen,” he said. “That is why the child has the condition.”
Kristen Ehresmann of the MDH (and a member of the CDC’s Advisory Committee on Immunization Practices, or ACIP) said parents had no reason to worry about vaccines or thimerosal.
“Some people have identified concerns that vaccines are linked to autism – one issue that people mention is thimerosal,” she said. “Most Americans over age six have received vaccines with thimerosal and there has not been any evidence of harm – dozens of studies of thousands of people around world have not shown a relationship between vaccines and autism.
Parents make the mistake of associated the timing of the onset of symptoms with the shots. “Vaccines are given to all children when they are infants and toddlers, and this is the same time when autism is diagnosed – so it is easy to think one is linked to the other, when it isn’t,” she said.
One mother wanted to know if the school district was misidentifying Somali children as having autism because of cultural or language barriers: “I don’t teach my son to count from 1 to 10, or to speak English, because I assume it will be taught in school. Does that mean he has autism, because he doesn’t speak the language?”
The answer was a resounding “no.” It was not possible, the educational officials said, that Somali children were being misidentified as having autism simply due to language barriers. They said they look at all developmental milestones that are “universal” in any culture.
Soon after, the mother who helped get the whole Somali-autism ball rolling, back in April of 2007, named Idil (she did not want her last name used) stood up and spoke about her son with autism.
“I would like to speak from the mother’s perspective, if your child breaks his hand or has a cold, you know where to take him. But as a mother who never had autism before, it was very difficult to know where to go for help,” she said.
“And as a mother, you will be frustrated with the condition of your child. You will feel anger and sorrow, and you will cry. Donating a kidney for your son would have been much easier than dealing with this condition.”
And, she said directly to the experts onstage: “All parents must be listened to and respected by health officials. It is not helpful when a doctor tells us, ‘We did the research, and immunization is not involved, there is no link.’ That is not an answer for a parent with a child with autism. We want them to listen to the parents. Please, do not disqualify our experience.”
At the very end, when time was running out and most state and city officials had left, the parent panel took to the stage.
One father, Abdulkadir Khalif, was clearly unhappy with the day’s proceedings.
“It looks like we are the last panel, and it would be a disservice to all the parents if we leave here without any proposal for steps forward,” he said, knowing that not a single “next step” had yet been proposed.
“What we have heard today is that autism has always been with us. One quote even said it was around 500 years ago. But if it always existed, it was not as terrible as what I saw with my own child. I think that, with God’s will at this gathering here today, I am confident we will be able to trace the origins and causes of autism, and probably its treatments, in the long run.”
Then Khalif told a fascinating history of malaria – which got its name from the Italian words for “bad air,” because Europeans thought the disease came from swamp gas. He spoke about a British explorer who was passing through Somali territory in the 19th Century when he saw that Somalis had built homes high in the trees, to avoid mosquito bites and, subsequently, malaria.
“The explorer wrote a long report on the Somali people, and how stupid they were to believe that malaria was caused by mosquitoes. But thanks to that, we eventually found the causes of malaria and treatment. So it was not due to Somali ignorance and stupidity, but ingenuity that we found the cause of malaria. And because of that, I believe that because of autism inside the Somali community, we will be leading science in the right direction, so that they can find the cause and cure for us.”
And he added: “The majority of the people in this room believe that vaccines cause autism. Now, I am not saying that, and I don’t want to be quoted saying that, But I believe there are certain things in those vaccines that trigger autism. I know that vaccines are very important and we must continue with them. But could (our children) be allergic to them, and is there any way to find out? Because if they are, then we need to find another way to immunize them.”
Khalif also noted that poverty was a major problem for Somali families dealing with autism.
“We don’t have a lot of money. But some families do have access to resources, and a lot of rich people can help their children. And so, to the health and education authorities (most of whom had left by this point) I request of you this: Where are the insurance policies from the government to make sure that we have the same access as wealthy parents to the facilities and programs that our children need?”
After the forum, I asked three parents to send me their thoughts on the day. Khalif’s arrived first:
Today's meeting was a mixed bag. It was a botched attempt by the MDH and some of the non-profits they fund to silence the anti-vaccine voice.
But there was no anti-vaccine voice before the meeting-there is one now.
The scientists and doctors who talked at the meeting were anxious to brainwash the Somali parents and convince them that vaccines are safe. By the time I took the floor, every parent was convinced that they did not have answers to the autism riddle. I would have been satisfied with an ‘I don't know’ answer.
What we heard was something like this: "We do not know what causes autism,” but we were told that it is not the vaccines. This sounds like a dumb statement to me. For heaven's sake, if you don't know what causes autism, then you don't know what does not cause autism. Just shut up.
At a personal level and talking for other parents, I think it was a resounding success for us because many parents will come out of the closet. (Many of us) will now join forces and fight openly and vehemently.
As an extension service, the forum was a disaster. The organizers did not have answers that the parents did not already know. If anything, they created more confusion and suspicion about the possibility of a cover-up. Therefore as a public relations effort, the MDH failed miserably.
As for the statistics that have been promised in March or any other time: They will not be able to come up with anything new. I will reject the results in advance, because it is not being done honestly. If the statistics will not say how many Somali children in Minnesota are autistic, and how many of them were born in the USA, then it will be inaccurate and misleading.
For someone to convince me that autism is a global problem and that it has always existed, I want them to show me that 50% of autistic Somali children were born outside this country. If the statistics should show that 99.9% of them were US born, then we will have a breakthrough in finding the cause of autism. We will wait and see.
And Idil, the mother who spoke out at the forum, sent me this:
I was impressed that almost everyone at the Minnesota health department came and helped with child care, registration, paying for food, etc. Clearly, they were polite and listened with open eyes and open ears.
But what I would have liked was more substance in the information. I also would have liked them to listen with open minds and open hearts. We have a Somali expression that says, ‘Words without action are worthless.’
I also was disappointed and even frustrated that many Somali doctors are not stepping up to the plate of helping their community. I will contact Dr Harare and ask him why he said vaccines do not cause or contribute to autism, since no-one really knows what the heck causes autism. I also will ask him that, if autism existed in Somalia, then why don't we have a name for it, and wouldn't we see adults with autism? I have never seen an adult Somali person with autism. We had mental retardation, Down syndrome and other mental issues, but not autism. Everyone is entitled to their own opinion, but for medical professionals there must be facts with that opinion. I just don't think Dr. Harare was saying factual information. But I want to not judge him and at least talk with him first.
If I can give a grade to the forum, it would be C+. There were many, many parents that wanted to come, but due to lack of proper
transportation, were not able to.
And finally, I received this from Hodan Hassan – a young mother and fledgling activist who helped pull the autism forum together:
What happened yesterday was what I expected - I knew we would be looked down on, undermined and insulted, especially when I called MDH so many times and told them: ‘Please don't screw this up and tell us something we already know.’ I even told them that we are going to have people who will witness this.
Almost every family I talked with and invited refused to come, because they did not want to listen to that crap. So instead some of them went to the Islamic convention and others stayed at home. That is why there weren’t many families there.
As an Islamic community, we believe that nothing can prevent DEATH, it is part of human nature, it is the cycle of life. It’s something that will happen, even if you are vaccinated. So I really feel insulted for even that part.
But, I want everyone to know that I really feel sorry for Kristen Ehresmann (of MDH and ACIP), because the poor lady has to save her own job so she can afford her son’s (autism) treatments. She is no policy maker, nor can she make a change except to cover it up. I also want her to know that, just because she can afford her son’s treatment, I want her to remember that not everyone can afford treatments like her. Her son will probably be close to being normal, but not our kids.
We are not trying to fight with the MDH. We did ask them to please change the vaccine schedule, and also take mercury out of the vaccines. I don't really care if it is trace or not: Mercury is mercury; when did it become medicine?
And, we are for vaccines, and we would like to vaccinate our kids, but only if it’s a GREEN VACCINE - in other words, a safe vaccine, and right now it’s not. Why refuse to do the changes, at the least in order to eliminate the suspicions around the vaccines?
Finally, I want everyone to know that the government is nothing without the people. Power to the people. I am very hopeful that the Obama administration will listen to us. We have been donating, even though we are broke. We have been knocking on doors, making phone calls, and praying and fasting to God to give us change. So I think it’s about time to give back to the people who have elected Obama.
NOTE: Most Somali refugees with children with autism have been extremely reluctant to speak to the media, so I did not get a wide cross-section of opinion about the meeting. I will attempt to reach out to more Somali attendees, if possible, to get their comments as well.
David Kirby is author of Evidence of Harm and contributor to Age of Autism.