Minnesota Department of Health: Closing the Door to Truth for Somali Children with Autism by Patti Carroll
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ADVOCACY
MINNESOTA DEPARTMENT OF HEALTH:
CLOSING THE DOOR TO TRUTH FOR SOMALI CHILDREN WITH AUTISM
By Patti Carroll
Patti Carroll lives in Shoreview, Minnesota with her two children, one of whom is vaccine-injured and diagnosed with autism. She works as a special education paraprofessional and serves on the board of Parents United Against Autism (PAA). Patti is a volunteer for Generation Rescue and the Minnesota Natural Health Coalition.
e have a problem in Minnesota – a problem that reflects a bigger picture of what is going on in the United States and increasingly throughout the world. Our culture is inundated with quick fixes. Wherever you look, you’ll find the promise of an easy remedy for whatever ails you. There are pills to relieve unpleasant aches and pains, surgeries to correct unappealing features, and shots to protect us from all manner of pesky diseases. People have somehow come to believe that the medical establishment has the answers for fixing everything. The problem is – they don’t. I came to that realization many years ago when the extent of my son’s vaccine injuries became clear to me. I am now reliving my loss of faith in the “authorities” by watching my Somali friends go through the same heartrending ordeal. A year ago, I met a couple from Somalia at the Autism Yesterday movie screening, and I was astonished to learn that they had never heard of autism before they came to the U.S. I had been reading about the high number of Somali children in the autism programs in Minneapolis, but the fact that autism is virtually unheard of in Somalia was news to me. This family had nine children; four were born after the parents came to the U.S. The first two children born in the U.S. were
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vaccinated and were diagnosed with autism. The parents did not vaccinate the youngest two children born in U.S. and they are fine – neurotypical. A few months later, I was contacted by a Somali mom who wanted advice on healing her daughter’s vaccine injuries. I knew from our first phone conversation that Hodan Hassan was a force to be reckoned with. She was an energetic and outspoken mother of four children. And she was absolutely outraged about what had happened to her daughter. All of Hodan’s children were born in the U.S., but with her oldest two, she was admittedly lax about getting them vaccinated according to the recommended schedule. By the time she was pregnant with her third child, Hodan had begun to succumb to the fear tactics regarding vaccine-preventable diseases. She vowed to do the “right thing” and properly protect her next baby from the frightening maladies that seemed to lurk everywhere in America. She vividly remembers being very pregnant and standing in line with a number of elderly people outside a clinic before it opened, all waiting to get their flu shots. When Geni was born in 2004, Hodan made sure she got all her vaccines on time. Hodan was never warned not to vaccinate her child when she was sick, and Geni often was. She was also never
informed that vaccines have side effects. It is unclear why, but somehow Geni got the hepatitis B vaccine five times by two years of age – which is two doses more than what is called for by the U.S. schedule. Geni was diagnosed with autism at age two and a half. When doctors told Hodan that behavioral therapy was the only treatment for autism, she knew it couldn’t be true. Hodan tells me that doctors are revered in Somalia. So, when a doctor there recommends a treatment, no one questions it. Vaccines are rare in Somalia, with an estimated 30% of children even having access to them. And the Somali schedule, outlined by the World Health Organization, contains roughly half the number of vaccines compared with the U.S. schedule. When Somali immigrants were told that all the vaccines given here were necessary to protect their children, they confidently complied. But Hodan knew immediately that vaccines had played a role in her daughter’s regression. She spoke out and asked questions but was scoffed at for her beliefs. By the time Hodan contacted me, she was totally disillusioned with the medical establishment and had begun her own research on how to help Geni. I was impressed with what Hodan already knew about biomedical treatments and how many of those treatments she had started already. She was fearless in her resolve to
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heal Geni. We talked and e-mailed regularly, and she told me that she was on the planning committee for an upcoming forum. The forum was intended to bring awareness about autism to the many Somali families who were dealing with this new affliction and to provide them with information on services for their children. Hodan asked if I would come to a planning meeting to help out, and I enthusiastically agreed. The planning meeting was already underway when I arrived, and I was immediately struck by the size of the group around the table. It was clear that this was a much bigger endeavor than I had pictured. I pulled up a chair and observed the dynamics of the group. There were representatives from many of the prominent service organizations in the Twin Cities as well as the Minnesota Department of Education and Minneapolis Public Schools. There were a couple of Somali parents (including Hodan) and Somali advocates from various aid organizations. But the largest group represented was the Minnesota Department of Health (MDH). One of the main topics of discussion was the media. Part of the group was pushing for a limit on media attendance, which I thought was odd. Why wouldn’t they want to publicize this event as much as possible? It was during this thread that a member of the MDH indicated that they didn’t want any of those “fringe groups” showing up. So there it was. They didn’t realize that one of those “fringe” people sat among them, although I can’t believe my face didn’t give me away at that point. I managed to stay quiet even with all the thoughts racing through my head. I had been given a copy of the agenda for the forum, and I started to flip through it. Under a panel titled “Addressing the Stigma,” I noted that there were plans to present information on studies related to immunizations and that the key message for that panel included stressing the importance of immunizations. My suspicions were confirmed: the Department of Health was planning to assure the Somali parents there was no connection between vaccines and autism. I made some calls after the planning
Previous Page: Hodan Hassan with her daughter, Geni. Above: Abdulkadir Khalif with his wife, Quresha, and son, Abdimalik. meeting and found out that Hodan had also been busy: David Kirby was planning to attend the forum. E-mails circulated among some of the forum planners discussing how they could keep him away from the Somali parents, which reinforced my opinion that they were planning something dishonest. On the day of the forum, some of my “fringe” friends came to support the Somali families (and make the MDH squirm), but we respectfully listened and followed the rules. This was not our forum, although it was our hope that the Somali families would see through the attempted complicity. And see through it they did. The opening statement by the Minnesota Commissioner of Health, Dr. Sanne Magnan, set the tone for the day. She stated that her job was to provide as many facts as possible so that people could form their own opinions. She then quoted a statement from the Centers for Disease Control (CDC) website that says the weight of evidence shows no causal relationship between vaccines and autism; she then told of a baby who died in Minnesota from a disease for which vaccines are available. I waited for all of those facts that she said she would provide, but, apparently, that was all she could come up with. Dr. Magnan stated that autism is a complex problem. She continued with a smile, “For every complex problem, there’s a simple solution – and it’s usually wrong.” This patronizing attempt at humor fell flat, as evidenced by the stony faces of the Somali parents. The forum was set up with panels of speakers on the stage. They would accept only written questions from the audience and then answer them after each panel had concluded their presentations. Aside from some information on available services, the vast majority of the day was spent convincing people that: 1) autism had been around for centuries; 2) they don’t know what causes it; 3) they didn’t know if the prevalence was higher in the Somali population; and 4) it is definitely not caused by vaccines. There were many written questions submitted, and, not surprisingly, they were mainly about vaccines. A parent asked whether they should be worried because their child’s vaccines had been doubled up. Kris Ehresmann, the director of immunizations for the MDH, very casually responded that it was “okay.” I literally gasped at this response, as did several other people in the room. I
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My suspicions were confirmed: the Department of Health was planning to assure the Somali parents there was no connection between vaccines and autism.
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Abdulkadir confirmed that there is no autism in Somalia and that every child of Somali immigrants with autism had been born in the U.S., including his youngest son. In fact, there is no word for autism in the Somali language.
wanted to scream, but instead I quickly wrote out my question: “How can you tell people that doubling up on their children’s vaccines is ‘okay’ when the U.S. Department of Health and Human Services conceded in the case of Hannah Poling that over-vaccination caused her autism??” I brought my question up, and it was handed to Ms. Ehresmann. She read it and acted confused, as if it were written in Somali. She set it aside and answered another question. The interpreter looked at it and put it back in Ms. Ehresmann’s pile, but she continued to answer other questions. I walked back up and talked to one of the forum planners, who then walked to the podium and handed my question back to Ms. Ehresmann. She still refused to answer it. Then they announced that they were running behind, and it was time to move on to the next panel. They assured everyone that any questions they “didn’t have time to answer” would be posted on their website. Dr. Judy Punyko, an epidemiologist from the MDH, was scheduled to give a report on the prevalence of autism in the Somali population compared with the general population. This was a highly anticipated part of the forum because the MDH had yet to declare any state of urgency over the
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alarming numbers. Dr. Punyko rattled on for a while about how difficult prevalence studies were and stated that she had had discussions with the CDC on how to best approach counting these children; however, she then announced that she did not have any information at that time. Disappointment and frustration were evident among the Somali parents. I wondered why she had even wasted valuable time speaking since she had nothing of substance to say. It was brought to our attention by David Kirby that Dr. Punyko was flown to CDC headquarters in Atlanta three days later – supposedly to present her findings to the CDC. One of the highlights of the day was meeting Abdulkadir Khalif, a Somali father. He later stated that there had been no antivaccine voice among the Somalis before the forum, but there certainly was afterward. Abdulkadir said, “We were continually told that no one knows what causes autism, but were then repeatedly 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 doesn’t cause autism.” The Somali parents were insulted that the Minnesota
Department of Health felt they could so easily be brainwashed. Abdulkadir was a member of the parent panel – which was intentionally placed at the very end of the forum – after most of the MDH and other speakers had left. He and other parents implored the “authorities” to set aside their biases and do the necessary research into the cause of autism – wherever it may lead. Abdulkadir confirmed that there is no autism in Somalia and that every child of Somali immigrants with autism had been born in the U.S., including his youngest son. In fact, there is no word for autism in the Somali language. I knew after hearing him speak that the MDH had greatly underestimated the will of the Somali people. One month later, after checking the website of the MDH for the answers they promised, I sent an e-mail to all MDH members who were part of the forum committee. I had actually submitted two questions at the forum – neither of which was answered, so I included the questions in my e-mail – just in case they had “gotten lost.” A couple of days later, I received a scripted reply from one of the Somali forum coordinators, who indicated the answers would be forthcoming. The language was typical of a bureaucrat, and I suspected the MDH was speaking through her. Interestingly, I have recently learned that the MDH gave a large grant to a foundation run by the same woman. After another month with no response, I e-mailed the same group and, again, no one from the MDH even bothered to reply. To this day, the difficult questions asked by parents at the forum remain unanswered. In March, there was an article in The New York Times titled “An Outbreak of Autism, or a Statistical Fluke?” There were a number of things in the article that the Somali community felt were demeaning. One such example was that of a Somali father, Abdirisak Jama, who, after being assured by the reporter that his story would be correctly represented, was sorely disappointed. The dad told the reporter, Donald G. McNeil, Jr., that he knew immediately when his son’s health changed that it was due to a series of vaccines he had received. This was at 18 months old, before which his son, Ayub, was a bright and happy child – perfectly normal. The young boy fainted on the way home from getting his 18-month vaccines and did not sleep at all that night. Over the following months, he continued having fainting spells
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(possibly seizures) and regressed into autism. At this point, the dad spoke to other parents in the Somali community and found out that this was happening to other Somali children, as well. In the article, the reporter stated instead that J.B. Handley of Generation Rescue had written a letter to the Somali parents warning them not to trust the state health department and suggesting they slow down their children’s shots. McNeil then continued “...the appeal [from JB] 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.” The emphasis is mine: I stress the word now because herein lies one misrepresentation in the article; it upset the dad greatly to have the reporter suggest that he was influenced in any way, especially when parents had come to this conclusion themselves and after comparing notes in the Somali community. The Somali parents did not come to this conclusion by power of suggestion, but rather by their experiences with their children and sharing the similar experiences within their community. The reporter attempted to minimize the Somalis’ knowledge of the vaccine connection by stating “antivaccine activists are campaigning among them,” insinuating that we (the good old “fringe” element) had sought out the Somali parents. This father told us later that he had never even heard of J.B. until well after the interview with McNeil. I again
watched my friends lose faith – this time toward the mainstream American media. On March 31, the long-awaited prevalence report from the MDH was presented and, surprisingly, they acknowledged that the numbers among the Somali kids were high – anywhere from two to seven times the rate of autism in the general population. I had assumed they would find a way to obscure the numbers in order to avoid taking any action. Since two years had passed since the Somali autism problem had been brought to their attention, I was amazed they couldn’t be more precise in their numbers. But at least it was finally confirmed that we have an autism cluster here in Minnesota. However, if anyone expected that this would finally sound the alarm with the media and the medical establishment, they were wrong. The only action plans presented by the MDH involved finding better ways to count these children! I sent an e-mail to Coleen Boyle at the CDC, assuming that the MDH was deferring any plan of action to them, but her reply was equally noncommittal: “Thank you for your email. CDC is ready to provide consultation and assistance to the Minnesota Department of Health in this ongoing public health investigation. Our decisions about next steps will be made in collaboration with the Minnesota Department of Health. We also support the recommendations outlined in the Department’s report which address a number of ways to further characterize the
prevalence of autism in Somali and nonSomali children in Minneapolis. I appreciate your interest in the investigation.” Wow. The MDH will devote money and manpower to devise new ways to track the prevalence of autism, and the CDC will provide support with that. Meanwhile, around 1 Somali child in 25 in Minnesota is afflicted with autism, and there is no plan whatsoever to run any medical tests to try and determine WHY! I was in for a checkup last week, and my doctor (who is very kind and always wants to know how my children are doing) asked if I had heard about all the Somali children with autism. She said she had read an article about a lack of vitamin D in these kids. This made a lot of sense because there is less sunlight here in Minnesota and we all slather our kids with sunscreen whenever they are outside. She wondered, “Wouldn’t it be incredible if they have finally figured out what causes autism?!” Ah, yes – wouldn’t the medical establishment be thrilled to find a “quick fix” for the most perplexing of conundrums – autism. But I had to burst her bubble. “No, doctor,” I replied, “I don’t think so, although a lack of vitamin D may certainly play a part, possibly by lowering a child’s ability to stave off the toxins they are assaulted with early in life.” I walked out of the office with a sickening feeling that the “authorities” are going to jump all over the vitamin D theory – because there is no one to blame if is true.
Previous Page: Hodan Hassan with Patti Carroll. Above left: Abdulkadir Khalif. Above right: Hodan Hassan with her daughter, Geni.
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In short, it’s the parents who are working in the trenches, fighting to heal these children and help families – not the government agencies we pay to protect us.
Abdulkadir just got back from spending a month in Kenya and Somalia. While there, he spent much of his time searching for cases of autism. While he was still unable to find any autism in Somalia, he did uncover some cases cropping up in Kenya. The significant factor in those cases is that autism is happening only in the most affluent families there – the ones with access to Western medicine – including vaccines. So, I am not buying the vitamin D theory as the sole causal factor because autism is now happening in Kenya in families who can afford to vaccinate their children and where there is certainly no lack of vitamin D. I got very disturbing news recently from a fellow autism mom, Halimatou Diallo, who is an immigrant from the West African country of Guinea. We have been in contact for several months since she first shared her son’s tragic story of vaccine injury. Halimatou has a friend who is also an immigrant from Guinea and who has a young baby. This child had been taken to the emergency room with a high fever that developed after a series of vaccines received at two months old. Knowing Halimatou’s story and fearing further injury to her own child, this mother spoke to the doctor about her trepidation concerning vaccines on a subsequent “well-baby” visit. She was actually told (by a doctor at a large medical facility in Minneapolis) that she did not need to worry because it was only the Somali children who were getting autism! But good things are happening, too. Abdulkadir has been in contact with parents in Toronto and Stockholm where similar clusters of autism have been reported among Somali immigrants. A number of us have been involved with creating and airing television programs on Somali television to inform parents about services and treatments for their children. The film Autism Yesterday has been subtitled in Somali and aired on Somali television here, and we are sending copies to other areas where there are large settlements of Somali immigrants. A nonprofit organization called Parents United Against Autism (PAA) was founded. PAA is providing invaluable support to families by going to their homes and helping with everything from paperwork, assisting with getting medical care and funding, facilitating the process of placing the children in applied behavior analysis centers, to even helping shop for gluten-free/casein-free food. Hodan’s phone rings constantly with parents looking for answers. We have been at the capitol fighting for laws to establish an autism task force, lower parental fees for state services, and mandate insurance coverage for autism treatments. At the time of this writing, a group of Somali families will be traveling to Chicago for the Autism One conference, and they plan to bring back plenty of information (and hope!) to the rest of their community. In short, it’s the parents who are working in the trenches, fighting to heal these children and help families – not the government agencies we pay to protect us. Our common hardships have forged strong bonds, and I am grateful to all the Somali parents for helping renew my own convictions. It breaks my heart to watch these beautiful children continue to be struck down while the medical establishment turns a blind eye. Abdulkadir wrote to me in an e-mail recently: Every time I hit a snag, I have always comforted myself by saying: “In America, everything is possible.” I have heard that repeated by our leaders and historians. Every morning when my baby Abdimalik wakes up, I tell myself that we have lost another day in our efforts to extricate him from the jaws of autism. Before I sleep every night, I surf the [Inter]net to look for answers, and what I see makes me both hopeful and desperate. Hopeful because I read
about success stories from parents and researchers. Desperate because I cannot do for my son what they can do for theirs. But it crushes me to hear that the government agencies that we could seek salvation from are rejecting the very existence of our problems. What happened to the America where everything is possible? We as citizens must rise up and be heard. This is a democracy, and public servants are answerable to the citizens. Isn’t there a way out or around this wall of resistance? How long should we wait for these people to change? For each day we exercise tolerance of them, our kids and families continue to suffer. We can do better than this really. Yes, we have a problem in Minnesota. And for this complex problem, there really IS a simple solution: look at the people who are affected. Study what common elements those people ingested or were exposed to. Listen to and believe their stories of what happened. Run medical tests to see what is physically wrong with them. When a handful of people in Minnesota became ill a couple of months ago, the MDH jumped right in and followed all of the aforementioned steps. Within a matter of days, they had tracked down the culprit – salmonella – and the source – a single five-pound tub of peanut butter. This same agency has a cluster of autism – a neurological disability that is destroying children and their families – sitting right on their doorstep, but they refuse to even open the door.
But it crushes me to hear that the government agencies that we could seek salvation from are rejecting the very existence of our problems. What happened to the America where everything is possible?
26 THE AUTISM FILE | www.autismfile.com | info@autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE ISSUE 32 2009
ADVOCACY
MINNESOTA DEPARTMENT OF HEALTH:
CLOSING THE DOOR TO TRUTH FOR SOMALI CHILDREN WITH AUTISM
By Patti Carroll
Patti Carroll lives in Shoreview, Minnesota with her two children, one of whom is vaccine-injured and diagnosed with autism. She works as a special education paraprofessional and serves on the board of Parents United Against Autism (PAA). Patti is a volunteer for Generation Rescue and the Minnesota Natural Health Coalition.
e have a problem in Minnesota – a problem that reflects a bigger picture of what is going on in the United States and increasingly throughout the world. Our culture is inundated with quick fixes. Wherever you look, you’ll find the promise of an easy remedy for whatever ails you. There are pills to relieve unpleasant aches and pains, surgeries to correct unappealing features, and shots to protect us from all manner of pesky diseases. People have somehow come to believe that the medical establishment has the answers for fixing everything. The problem is – they don’t. I came to that realization many years ago when the extent of my son’s vaccine injuries became clear to me. I am now reliving my loss of faith in the “authorities” by watching my Somali friends go through the same heartrending ordeal. A year ago, I met a couple from Somalia at the Autism Yesterday movie screening, and I was astonished to learn that they had never heard of autism before they came to the U.S. I had been reading about the high number of Somali children in the autism programs in Minneapolis, but the fact that autism is virtually unheard of in Somalia was news to me. This family had nine children; four were born after the parents came to the U.S. The first two children born in the U.S. were
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vaccinated and were diagnosed with autism. The parents did not vaccinate the youngest two children born in U.S. and they are fine – neurotypical. A few months later, I was contacted by a Somali mom who wanted advice on healing her daughter’s vaccine injuries. I knew from our first phone conversation that Hodan Hassan was a force to be reckoned with. She was an energetic and outspoken mother of four children. And she was absolutely outraged about what had happened to her daughter. All of Hodan’s children were born in the U.S., but with her oldest two, she was admittedly lax about getting them vaccinated according to the recommended schedule. By the time she was pregnant with her third child, Hodan had begun to succumb to the fear tactics regarding vaccine-preventable diseases. She vowed to do the “right thing” and properly protect her next baby from the frightening maladies that seemed to lurk everywhere in America. She vividly remembers being very pregnant and standing in line with a number of elderly people outside a clinic before it opened, all waiting to get their flu shots. When Geni was born in 2004, Hodan made sure she got all her vaccines on time. Hodan was never warned not to vaccinate her child when she was sick, and Geni often was. She was also never
informed that vaccines have side effects. It is unclear why, but somehow Geni got the hepatitis B vaccine five times by two years of age – which is two doses more than what is called for by the U.S. schedule. Geni was diagnosed with autism at age two and a half. When doctors told Hodan that behavioral therapy was the only treatment for autism, she knew it couldn’t be true. Hodan tells me that doctors are revered in Somalia. So, when a doctor there recommends a treatment, no one questions it. Vaccines are rare in Somalia, with an estimated 30% of children even having access to them. And the Somali schedule, outlined by the World Health Organization, contains roughly half the number of vaccines compared with the U.S. schedule. When Somali immigrants were told that all the vaccines given here were necessary to protect their children, they confidently complied. But Hodan knew immediately that vaccines had played a role in her daughter’s regression. She spoke out and asked questions but was scoffed at for her beliefs. By the time Hodan contacted me, she was totally disillusioned with the medical establishment and had begun her own research on how to help Geni. I was impressed with what Hodan already knew about biomedical treatments and how many of those treatments she had started already. She was fearless in her resolve to
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heal Geni. We talked and e-mailed regularly, and she told me that she was on the planning committee for an upcoming forum. The forum was intended to bring awareness about autism to the many Somali families who were dealing with this new affliction and to provide them with information on services for their children. Hodan asked if I would come to a planning meeting to help out, and I enthusiastically agreed. The planning meeting was already underway when I arrived, and I was immediately struck by the size of the group around the table. It was clear that this was a much bigger endeavor than I had pictured. I pulled up a chair and observed the dynamics of the group. There were representatives from many of the prominent service organizations in the Twin Cities as well as the Minnesota Department of Education and Minneapolis Public Schools. There were a couple of Somali parents (including Hodan) and Somali advocates from various aid organizations. But the largest group represented was the Minnesota Department of Health (MDH). One of the main topics of discussion was the media. Part of the group was pushing for a limit on media attendance, which I thought was odd. Why wouldn’t they want to publicize this event as much as possible? It was during this thread that a member of the MDH indicated that they didn’t want any of those “fringe groups” showing up. So there it was. They didn’t realize that one of those “fringe” people sat among them, although I can’t believe my face didn’t give me away at that point. I managed to stay quiet even with all the thoughts racing through my head. I had been given a copy of the agenda for the forum, and I started to flip through it. Under a panel titled “Addressing the Stigma,” I noted that there were plans to present information on studies related to immunizations and that the key message for that panel included stressing the importance of immunizations. My suspicions were confirmed: the Department of Health was planning to assure the Somali parents there was no connection between vaccines and autism. I made some calls after the planning
Previous Page: Hodan Hassan with her daughter, Geni. Above: Abdulkadir Khalif with his wife, Quresha, and son, Abdimalik. meeting and found out that Hodan had also been busy: David Kirby was planning to attend the forum. E-mails circulated among some of the forum planners discussing how they could keep him away from the Somali parents, which reinforced my opinion that they were planning something dishonest. On the day of the forum, some of my “fringe” friends came to support the Somali families (and make the MDH squirm), but we respectfully listened and followed the rules. This was not our forum, although it was our hope that the Somali families would see through the attempted complicity. And see through it they did. The opening statement by the Minnesota Commissioner of Health, Dr. Sanne Magnan, set the tone for the day. She stated that her job was to provide as many facts as possible so that people could form their own opinions. She then quoted a statement from the Centers for Disease Control (CDC) website that says the weight of evidence shows no causal relationship between vaccines and autism; she then told of a baby who died in Minnesota from a disease for which vaccines are available. I waited for all of those facts that she said she would provide, but, apparently, that was all she could come up with. Dr. Magnan stated that autism is a complex problem. She continued with a smile, “For every complex problem, there’s a simple solution – and it’s usually wrong.” This patronizing attempt at humor fell flat, as evidenced by the stony faces of the Somali parents. The forum was set up with panels of speakers on the stage. They would accept only written questions from the audience and then answer them after each panel had concluded their presentations. Aside from some information on available services, the vast majority of the day was spent convincing people that: 1) autism had been around for centuries; 2) they don’t know what causes it; 3) they didn’t know if the prevalence was higher in the Somali population; and 4) it is definitely not caused by vaccines. There were many written questions submitted, and, not surprisingly, they were mainly about vaccines. A parent asked whether they should be worried because their child’s vaccines had been doubled up. Kris Ehresmann, the director of immunizations for the MDH, very casually responded that it was “okay.” I literally gasped at this response, as did several other people in the room. I
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My suspicions were confirmed: the Department of Health was planning to assure the Somali parents there was no connection between vaccines and autism.
ISSUE 32 2009 REPRINTED WITH PERMISSION © THE AUTISM FILE
Abdulkadir confirmed that there is no autism in Somalia and that every child of Somali immigrants with autism had been born in the U.S., including his youngest son. In fact, there is no word for autism in the Somali language.
wanted to scream, but instead I quickly wrote out my question: “How can you tell people that doubling up on their children’s vaccines is ‘okay’ when the U.S. Department of Health and Human Services conceded in the case of Hannah Poling that over-vaccination caused her autism??” I brought my question up, and it was handed to Ms. Ehresmann. She read it and acted confused, as if it were written in Somali. She set it aside and answered another question. The interpreter looked at it and put it back in Ms. Ehresmann’s pile, but she continued to answer other questions. I walked back up and talked to one of the forum planners, who then walked to the podium and handed my question back to Ms. Ehresmann. She still refused to answer it. Then they announced that they were running behind, and it was time to move on to the next panel. They assured everyone that any questions they “didn’t have time to answer” would be posted on their website. Dr. Judy Punyko, an epidemiologist from the MDH, was scheduled to give a report on the prevalence of autism in the Somali population compared with the general population. This was a highly anticipated part of the forum because the MDH had yet to declare any state of urgency over the
24 THE AUTISM FILE | www.autismfile.com | info@autismfile.com
alarming numbers. Dr. Punyko rattled on for a while about how difficult prevalence studies were and stated that she had had discussions with the CDC on how to best approach counting these children; however, she then announced that she did not have any information at that time. Disappointment and frustration were evident among the Somali parents. I wondered why she had even wasted valuable time speaking since she had nothing of substance to say. It was brought to our attention by David Kirby that Dr. Punyko was flown to CDC headquarters in Atlanta three days later – supposedly to present her findings to the CDC. One of the highlights of the day was meeting Abdulkadir Khalif, a Somali father. He later stated that there had been no antivaccine voice among the Somalis before the forum, but there certainly was afterward. Abdulkadir said, “We were continually told that no one knows what causes autism, but were then repeatedly 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 doesn’t cause autism.” The Somali parents were insulted that the Minnesota
Department of Health felt they could so easily be brainwashed. Abdulkadir was a member of the parent panel – which was intentionally placed at the very end of the forum – after most of the MDH and other speakers had left. He and other parents implored the “authorities” to set aside their biases and do the necessary research into the cause of autism – wherever it may lead. Abdulkadir confirmed that there is no autism in Somalia and that every child of Somali immigrants with autism had been born in the U.S., including his youngest son. In fact, there is no word for autism in the Somali language. I knew after hearing him speak that the MDH had greatly underestimated the will of the Somali people. One month later, after checking the website of the MDH for the answers they promised, I sent an e-mail to all MDH members who were part of the forum committee. I had actually submitted two questions at the forum – neither of which was answered, so I included the questions in my e-mail – just in case they had “gotten lost.” A couple of days later, I received a scripted reply from one of the Somali forum coordinators, who indicated the answers would be forthcoming. The language was typical of a bureaucrat, and I suspected the MDH was speaking through her. Interestingly, I have recently learned that the MDH gave a large grant to a foundation run by the same woman. After another month with no response, I e-mailed the same group and, again, no one from the MDH even bothered to reply. To this day, the difficult questions asked by parents at the forum remain unanswered. In March, there was an article in The New York Times titled “An Outbreak of Autism, or a Statistical Fluke?” There were a number of things in the article that the Somali community felt were demeaning. One such example was that of a Somali father, Abdirisak Jama, who, after being assured by the reporter that his story would be correctly represented, was sorely disappointed. The dad told the reporter, Donald G. McNeil, Jr., that he knew immediately when his son’s health changed that it was due to a series of vaccines he had received. This was at 18 months old, before which his son, Ayub, was a bright and happy child – perfectly normal. The young boy fainted on the way home from getting his 18-month vaccines and did not sleep at all that night. Over the following months, he continued having fainting spells
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(possibly seizures) and regressed into autism. At this point, the dad spoke to other parents in the Somali community and found out that this was happening to other Somali children, as well. In the article, the reporter stated instead that J.B. Handley of Generation Rescue had written a letter to the Somali parents warning them not to trust the state health department and suggesting they slow down their children’s shots. McNeil then continued “...the appeal [from JB] 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.” The emphasis is mine: I stress the word now because herein lies one misrepresentation in the article; it upset the dad greatly to have the reporter suggest that he was influenced in any way, especially when parents had come to this conclusion themselves and after comparing notes in the Somali community. The Somali parents did not come to this conclusion by power of suggestion, but rather by their experiences with their children and sharing the similar experiences within their community. The reporter attempted to minimize the Somalis’ knowledge of the vaccine connection by stating “antivaccine activists are campaigning among them,” insinuating that we (the good old “fringe” element) had sought out the Somali parents. This father told us later that he had never even heard of J.B. until well after the interview with McNeil. I again
watched my friends lose faith – this time toward the mainstream American media. On March 31, the long-awaited prevalence report from the MDH was presented and, surprisingly, they acknowledged that the numbers among the Somali kids were high – anywhere from two to seven times the rate of autism in the general population. I had assumed they would find a way to obscure the numbers in order to avoid taking any action. Since two years had passed since the Somali autism problem had been brought to their attention, I was amazed they couldn’t be more precise in their numbers. But at least it was finally confirmed that we have an autism cluster here in Minnesota. However, if anyone expected that this would finally sound the alarm with the media and the medical establishment, they were wrong. The only action plans presented by the MDH involved finding better ways to count these children! I sent an e-mail to Coleen Boyle at the CDC, assuming that the MDH was deferring any plan of action to them, but her reply was equally noncommittal: “Thank you for your email. CDC is ready to provide consultation and assistance to the Minnesota Department of Health in this ongoing public health investigation. Our decisions about next steps will be made in collaboration with the Minnesota Department of Health. We also support the recommendations outlined in the Department’s report which address a number of ways to further characterize the
prevalence of autism in Somali and nonSomali children in Minneapolis. I appreciate your interest in the investigation.” Wow. The MDH will devote money and manpower to devise new ways to track the prevalence of autism, and the CDC will provide support with that. Meanwhile, around 1 Somali child in 25 in Minnesota is afflicted with autism, and there is no plan whatsoever to run any medical tests to try and determine WHY! I was in for a checkup last week, and my doctor (who is very kind and always wants to know how my children are doing) asked if I had heard about all the Somali children with autism. She said she had read an article about a lack of vitamin D in these kids. This made a lot of sense because there is less sunlight here in Minnesota and we all slather our kids with sunscreen whenever they are outside. She wondered, “Wouldn’t it be incredible if they have finally figured out what causes autism?!” Ah, yes – wouldn’t the medical establishment be thrilled to find a “quick fix” for the most perplexing of conundrums – autism. But I had to burst her bubble. “No, doctor,” I replied, “I don’t think so, although a lack of vitamin D may certainly play a part, possibly by lowering a child’s ability to stave off the toxins they are assaulted with early in life.” I walked out of the office with a sickening feeling that the “authorities” are going to jump all over the vitamin D theory – because there is no one to blame if is true.
Previous Page: Hodan Hassan with Patti Carroll. Above left: Abdulkadir Khalif. Above right: Hodan Hassan with her daughter, Geni.
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In short, it’s the parents who are working in the trenches, fighting to heal these children and help families – not the government agencies we pay to protect us.
Abdulkadir just got back from spending a month in Kenya and Somalia. While there, he spent much of his time searching for cases of autism. While he was still unable to find any autism in Somalia, he did uncover some cases cropping up in Kenya. The significant factor in those cases is that autism is happening only in the most affluent families there – the ones with access to Western medicine – including vaccines. So, I am not buying the vitamin D theory as the sole causal factor because autism is now happening in Kenya in families who can afford to vaccinate their children and where there is certainly no lack of vitamin D. I got very disturbing news recently from a fellow autism mom, Halimatou Diallo, who is an immigrant from the West African country of Guinea. We have been in contact for several months since she first shared her son’s tragic story of vaccine injury. Halimatou has a friend who is also an immigrant from Guinea and who has a young baby. This child had been taken to the emergency room with a high fever that developed after a series of vaccines received at two months old. Knowing Halimatou’s story and fearing further injury to her own child, this mother spoke to the doctor about her trepidation concerning vaccines on a subsequent “well-baby” visit. She was actually told (by a doctor at a large medical facility in Minneapolis) that she did not need to worry because it was only the Somali children who were getting autism! But good things are happening, too. Abdulkadir has been in contact with parents in Toronto and Stockholm where similar clusters of autism have been reported among Somali immigrants. A number of us have been involved with creating and airing television programs on Somali television to inform parents about services and treatments for their children. The film Autism Yesterday has been subtitled in Somali and aired on Somali television here, and we are sending copies to other areas where there are large settlements of Somali immigrants. A nonprofit organization called Parents United Against Autism (PAA) was founded. PAA is providing invaluable support to families by going to their homes and helping with everything from paperwork, assisting with getting medical care and funding, facilitating the process of placing the children in applied behavior analysis centers, to even helping shop for gluten-free/casein-free food. Hodan’s phone rings constantly with parents looking for answers. We have been at the capitol fighting for laws to establish an autism task force, lower parental fees for state services, and mandate insurance coverage for autism treatments. At the time of this writing, a group of Somali families will be traveling to Chicago for the Autism One conference, and they plan to bring back plenty of information (and hope!) to the rest of their community. In short, it’s the parents who are working in the trenches, fighting to heal these children and help families – not the government agencies we pay to protect us. Our common hardships have forged strong bonds, and I am grateful to all the Somali parents for helping renew my own convictions. It breaks my heart to watch these beautiful children continue to be struck down while the medical establishment turns a blind eye. Abdulkadir wrote to me in an e-mail recently: Every time I hit a snag, I have always comforted myself by saying: “In America, everything is possible.” I have heard that repeated by our leaders and historians. Every morning when my baby Abdimalik wakes up, I tell myself that we have lost another day in our efforts to extricate him from the jaws of autism. Before I sleep every night, I surf the [Inter]net to look for answers, and what I see makes me both hopeful and desperate. Hopeful because I read
about success stories from parents and researchers. Desperate because I cannot do for my son what they can do for theirs. But it crushes me to hear that the government agencies that we could seek salvation from are rejecting the very existence of our problems. What happened to the America where everything is possible? We as citizens must rise up and be heard. This is a democracy, and public servants are answerable to the citizens. Isn’t there a way out or around this wall of resistance? How long should we wait for these people to change? For each day we exercise tolerance of them, our kids and families continue to suffer. We can do better than this really. Yes, we have a problem in Minnesota. And for this complex problem, there really IS a simple solution: look at the people who are affected. Study what common elements those people ingested or were exposed to. Listen to and believe their stories of what happened. Run medical tests to see what is physically wrong with them. When a handful of people in Minnesota became ill a couple of months ago, the MDH jumped right in and followed all of the aforementioned steps. Within a matter of days, they had tracked down the culprit – salmonella – and the source – a single five-pound tub of peanut butter. This same agency has a cluster of autism – a neurological disability that is destroying children and their families – sitting right on their doorstep, but they refuse to even open the door.
But it crushes me to hear that the government agencies that we could seek salvation from are rejecting the very existence of our problems. What happened to the America where everything is possible?
26 THE AUTISM FILE | www.autismfile.com | info@autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE ISSUE 32 2009
