When Sunday, June 8, 2014 arrives we hope you will be by our side. Great speakers have been confirmed and include attorney Bill Choslovsky, advocate and author Kim Stagliano, and Kathy Brown, President of the Developmental Disabilities Nurses Association.
VOR’s Washington Initiative, which includes Congressional visits, will occur the week of June 9, 2014. For more information, including registration opportunities, visit VOR’s website.
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VOR 2014 Annual Conference and Initiative
"Keep up the good work! I found this Conference to be very educational and encouraging! Thanks for all you do!" ~ 2013 Conference Participant
By Abdulkadir Khalif
I am writing a response and a rebuttal to Maura Lerner’s story of 03/17/2011, (HERE) concerning Measles and unvaccinated Somali Kids in Minneapolis. This story, like so many others before it on this newspaper and others across the country, highlights the issue of autism and Somali kids. There is an increasing sense of desperation in medical circles and the media concerning the causes of autism and how to delink it to vaccinations. It is the wish of every parent in this country and around the world that causes and cures of autism are found quickly, and hopefully without forgoing the benefits of vaccines. I am a Somali parent, resident in Minneapolis and a father of a 6-year old boy who is severely affected by autism. He is still non-verbal and horribly dysfunctional.
As a parent, I am desperately looking for answers from my son’s doctors. I am looking for a cure for my son’s conditions, or at least a treatment regime that would make him function as a human being and hopefully live an independent life once we are gone. I am not finding hope anywhere and obviously no answers for my many questions. Our doctors and scientists agree on a few things:
To me that sounds like a bunch of contradictions. It is sad that we have to trust our lives and that of our kids to a few technocrats and uncertain scientists who are voting with their pockets instead of their guts.
I have a gut feeling (trust your gut feelings always) that my son was affected by what got into his body around the time he was 18 months. My son grew up a normal, healthy and bouncing baby. He started speaking a few words by the time he was about 15 months. He waited for me at the door everyday as I got back home from work and welcomed me inside. He knew how I opened the door and the approximate time I came home each day. He raced down the stairs and hugged me, then held my hand and led me inside. I looked forward to those moments and they were perfect moments as they relieved me of the day’s tensions and small workplace frustrations. Then one day, I came home and he did not welcome me as was his wont.
A few days earlier, Abdimalik got his 18 months MMR vaccine as scheduled. I still remember that day. His mother was coming back from his appointment and passed my place of work to give me a ride home. Abdimalik was sitting in his car-seat, very quite, subdued and absent minded. As I took my seat I glanced back wondering if he was asleep or not. He was seated squarely in his seat but was looking straight ahead at a point in space. I called out to him and he did not respond. I shook him and he did not move. I looked at my wife and asked what happened and she explained where they came from and that everything went well. She explained how he thanked the nurse as she put a sticker on his chest before the injection in order to build rapport. After that we rode home in silence and life was never the same again.
Why bother to call attention to Dr. Paul Offit, the vaccine patent-holder who has led the attack on the idea that vaccines have anything to do with autism or any of the myriad of other ailments afflicting this generation of American children? Well, because other people are paying attention -- including the nation's pediatricians and the mainstream journalists who need to start calling him to account. Offit has a new book out -- "Deadly Choices: How the Anti-Vaccine Movement Threatens Us All." Here's the question doctors who recommend him to nervous parents, and parents unsure what to think, and journalists who interview him, need to ask: Why is Offit transparently opposed to ever studying the health outcomes of vaccinated versus unvaccinated Americans, even as he acknowledges that vaccines have a long history of causing serious side effects?
While his last book, "Autism's False Prophets," focused squarely on the disability now afflicting 1 in 100 children, Offit branches out here to deride those who have any concerns whatsoever about the safety of the current vaccine schedule. There is plenty of sympathy for parents of children who have died of infectious diseases, but perfunctory dismissal in cases where parents blame vaccines.
Thus Michael Belkin, whose daughter Lyla died after her hepatitis B shot, is treated as a gullible gadfly, goaded by Barbara Loe Fisher into heading "the Hepatitis B Vaccine Project at her National Vaccine information Center. Soon Belkin, a Wall Street financial adviser, was everywhere" -- everywhere being the CDC and Congress, which is exactly where he should have been as a citizen and parent who believes that Hep B is a dangerous and unnecessary childhood vaccine that killed his daughter. Sniffs Offit: "Despite Belkin's certainty that hepatitis B vaccine had caused his daughter's SIDS, study after study failed to support him."
Parents of girls who died after Gardasil vaccination get similar treatment. The idea that Gardasil is dangerous is "a contention refuted by careful study" and "established science."
And chickenpox vaccines are critically important because chickenpox can lead to shingles, "one of medicine's most debilitating diseases. Shingles is so painful that it has at times led to suicide. And shingles doesn't only affect the skin; sometimes when the virus reawakens it causes strokes, resulting in permanent paralysis. Chickenpox is a disease worth preventing." Absent is any acknowledgement of the evidence that the vaccine itself, by reducing cases of simple childhood chickenpox, has led to a big increase in shingles by removing the protective immunological "bump" those who already harbor the virus receive when they are re-exposed.
Hannah Poling and the government's $20 million concession that vaccines resulted in her autistic regression? Not mentioned. Billions paid out by vaccine court for all sorts of injuries over the past 20 years? Well, vaccine court is a strange place ...
Anyone concerned about any of these things fits Offit's definition of anti-vaccine, because vaccines don't cause any of them, because Paul Offit says so, a solipsism that is really quite breathtaking: "[B]ecause anti-vaccine activists today define safe as free from side effects such as autism, learning disabilities, attention deficit disorder, multiple sclerosis, diabetes, strokes, heart attacks, and blood clots -- conditions that aren't caused by vaccines -- safer vaccines, using their definition, can never be made."
Yet Offit himself yields an amazing amount of ground by describing unsafe vaccines -- including early polio shots and a rotavirus vaccine that was the immediate predecessor of his own. His technique is to situate all this as historical, part of the triumphant march of progress into the bright sunshine of vaccine safety. Here's a description I find especially astonishing: "When Barbara Loe Fisher burst onto the scene, several vaccines had serious side effects, every year causing allergic reactions, paralysis, or death. Public health officials and doctors didn't hide these problems. But they didn't do anything to correct them, either. And most parents had no idea they existed."
Public health officials did nothing to fix vaccine problems that led to paralysis and death? And parents didn't know about it? Is this not an indictment of the medical industry, and an unintentional endorsement advocates who have worked to remedy it? Does it not argue that at least some of the time parental observations may well be correct, an early warning system of the first order? Well, no, because apparently those things no longer happen -- to say otherwise, in Offit's parallel universe, would be anti-vaccine conspiratorial quackery.
Much of the book is a score-settling screed against anyone who's ever criticized him or vaccine safety surveillance, including Fisher, Jenny McCarthy and J.B. Handley. So it's no surprise that his "can't be done" argument against studying unvaccinated populations for any untoward outcomes arrives in the middle of an attack on Handley. Offit quotes J.B.'s comments on a Larry King segment in April 2009: "Larry, we have no idea what the combination risk of our vaccine schedule looks like. At the two-month visit, a child gets six vaccines in under fifteen minutes. The only way to test that properly would be to have a group of kids who get all six and a group of kids who got none and see what happens. They don't do that testing. They have no idea."
Offit's comment: "Handley was asking for a study of vaccinated and unvaccinated children. One result is certain: given recent outbreaks of Hib, measles, mumps, and pertussis, no vaccinated children would suffer and possibly die from preventable infections. It would be, of course, an entirely unethical experiment. No investigator could prospectively study children who are denied a potentially lifesaving medical product. And no university's or hospital's institutional review board worth its salt would ever approve such a study."
Offit goes on, outrageously, to compare Handley's proposal to the infamous Tuskegee experiment in which doctors withheld treatment from black males suffering from syphilis in order to study the natural course of the disease.
P-LEEZE. No one I know of is suggesting that a study of unvaccinated children deliberately withhold vaccination. Rather, there are growing numbers of never-vaccinated children in America -- a fact Offit acknowledges with dismay -- and plenty of families willing to participate in such a study. State governments have vaccine waivers on file for public school attendance that are another obvious source of non-life-threatening data.
The real problem for Offit is not an ethical one; the real problem is that any such study would trump all the self-interested industry and CDC studies that never manage to include never-vaccinated chldren as a control group. Informal efforts to do that -- by myself, J.B.'s Generation Rescue and others -- have pointed toward less autism and asthma, and been met by the medical establishment and its sycophantic sock puppets with an absolute frenzy of denial and misdirection.
In our book, "The Age of Autism -- Mercury, Medicine, and a Man-made Epidemic," Mark Blaxill and I discuss this aversion to doing the obvious. "A very simple test goes right to the heart of the vaccine controversy: What is the difference in total health outcomes, including autism, between vaccinated and unvaccinated populations? We would argue that we've uncovered a number of natural experiments in human populations that suggest we should be seriously concerned over the ever-increasing load of childhood vaccinations, especially in the United States. ... Oddly, when it comes to doing such studies in human populations, and studying the autism levels in the Amish, the homeschooled, or philosophical objectors, vaccine industry proponents resist mightily. Conducting human vax/unvax studies in existing unvaccinated groups would be so fraught with methodological problems that they are 'retrospectively impossible.' As for controlled studies, they would be so burdened with permission problems that they would be 'prospectively unethical.' In short, the resistance to the proposal to do vax/unvax work has not only taken the attitude that 'we already know the answers,' but 'we should not seek to know.' It's pretty hard to make scientific progress in the face of this kind of epistemological nihilism."
I am begging, on bended knee, that pediatricians quit putting Offit on a pedestal, and that mainstream journalists do their job and ask him why he is so averse to any study that involves the health of never-vaccinated children. Don't let him call you "anti-vaccine," and don't let him change the subject to the quite thoroughly separate issue of preventing deadly disease. That's an important topic, but there is room at the table for both effective public health policies against disease AND a fearless examination of whether today's vaccine schedule contributes to chronic health problems -- whether Paul Offit denies it or not.
Dan Olmsted is Editor of Age of Autism
By Abdulkadir Khalif
Long years ago a cousin of mine purchased a house in a subdivision in Nairobi and was upset to find that his title documents showed a parcel that was completely different from what he was shown on the ground. He asked me to check it up and true to his suspicion the facts on the ground did not agree with the documents. To be sure and because of possible litigation in the pipeline I searched for all relevant maps and monuments in the vicinity and carried out all necessary measurements in order to build up an air-tight case. My cousin went to court. The defendants were his neighbor who had encroached on his land and the developer who sold him something different.
My cousin’s attorney crossed examined me in court and displayed all relevant evidences to show our case. The proof was beyond doubt and the other side was desperate to stop us. They refused to accept the plans and maps we brought to court. They insisted the court uses theirs. We had no reason to refuse it because we were confident of our position. The judge had a fixed smile on his face as our opponents struggled and sweated. They asked for an adjournment and we said OK. Come the afternoon session and they had something interesting to say: That I was not licensed to practice land surveying in Kenya and I am therefore a fraud and a cheat, and that my evidence should be thrown out. The judge knew better since he could see that we had a great case and that it was the other side that deserved those names. They lost and we won. My cousin got back all that he paid for. I have since been licensed to practice land surveying in Kenya.
Sorry to bore you with this but I see a similar situation in the struggle the US and UK medical establishment is waging against our hero Dr. Andrew Wakefield. I will also bring to your attention the story on MPR (Minnesota Public Radio) titled: “Controversial Autism Researcher tells local Somalis disease is solvable”, by Rupa Shenoy and dated December 17, 2010. (HERE)
Dr. Andrew Wakefield had a license in the UK and could have got one easily in the USA if he did not cross paths with the pharmaceutical industry and their medical cronies. He lost his license in the UK not because he failed any scientific test but because he pioneered true science that did not immediately bring in a flood of money. He chose to be on the side of truth and our children instead of being on the side of big business. He is compassionate enough to come to the Somali families in Minnesota and to give them hope that may be; just may be, there could be a possible cure for autism if the obvious cluster in Minnesota is investigated properly and by people with scientific integrity and human hearts, and who are not looking back over their shoulders in fear.
By Abdulkadir Khalif
As Quresha and I prepared for the short flight to Chicago from Minneapolis for Autism One Conference on the evening of 05/19/2009, I was not sure what to expect and how events would fold out for the next few days. I was mostly quiet worrying about the other members of the Minneapolis Somali parents many of who would join us the following day, and the other large delegation from Toronto Canada who would have fewer problems because they have been to Autism One conference many times before. I spoke with all of them before flying out just to make sure all was well. This being my first Autism One Conference means that I have to be in my best elements, especially when so many people are relying on me. The Northwest flight landed on time at O’Hare International Airport and our transit to baggage claim was easy. Ten minutes later we were on the shuttle to Marriott Suites O’Hare. The check-in there was quick and easy too, thanks to the efficient arrangements by Teri Arranga (thank you Teri). We will be forever grateful to her and JB Handly for making it possible for so many of us from Minnesota, Ohio, California and Toronto to attend this years’ conference. The rest is up to us.
Managing Editor's Note: Our contributing editor in Minnesota, Abdulkadir Khalif organized a toy drive for children with autism with Totally Kids. We first told you about it HERE. Below is the letter from Jesse Dumas of Totally Kids about the event's success. You can meet Abdulkadir on Saturday at our Age of Autism presentation at Autism One.
Recently my company, Totally Kids, partnered with Abdulkadir Khalif and Parents United Against Autism for an Earth Day Toy Recycling Drive with the intent of taking in toys that could be redistributed to families in need affected by autism. On every conceivable level, it was a tremendous success.
As a newcomer to the autism battlefront, my business and I had no idea what to expect in terms of response to our little campaign, but thanks largely to the support of Abdulkadir, the PAA, and the readers of this site, we were treated to meeting many parent-warriors that came and spent some time with us. Admittedly, the scope of the campaign was rather small, and in trying to get publicity, we realized just how difficult it was to capture people’s attention. But in seeing the support that the families give one another, we realized that we had become a part of something very special, albeit much bigger than us. It absolutely warmed the hearts of my colleagues and I to see the donation box fill up day after day and eventually be taken off by Mr. Khalif to deliver to the children who can use them. Thank you a million times over to all of you who donated, to all of you who spread the word, and to all of you who are a part of making this problem visible to the ones who need to see.
Managing Editor's Note: Read "Ghana, disability law leaves out autistic children" from AllAfrica.com HERE. Abdulkadir Khalif adds perspective to the state of autism in Africa.
By Abdulkadir Khalif
Ghana is a West African country neighboring Nigeria. It was a British colony until 1956 when it became the first sub-Saharan African country to attain independence from colonialism. The only other Black African countries which were free at that time were Liberia in West Africa and Ethiopia in the east. Together, those three countries encouraged and finally succeeded in freeing the rest of Africa. Ghana has had a turbulent history starting from time when its first president Kwame Nkurumah was overthrown by a military junta that ruled Ghana until very recently. Ghana has produced very prominent politicians and statesmen, the most famous of whom is Kofi Annan the last Secretary General of the United Nations.
Ghanaians are among the most educated Africans today, and Ghana as a country is considered by many to be a shining example in economic stability, political maturity and as a leader in intra-African affairs. It is also amongst the least corrupt in West Africa maybe because unlike Nigeria it has not been devastated by oil exploration and exploitation and thus escaped all the corruption that goes with such economic trends. Today Ghana is an island of peace in a turbulent region of Africa.
Ghana’s peace and development brought with it all the “perks” that come with that status. It has a sophisticated physical infrastructure and academic institutions it can be proud of. Ghana is self-reliant in food and is the home for the beverage called cocoa. Earlier in its history, Ghana’s children were devastated by a disease called kwashakor. The people of Ghana described it as “the disease the old baby gets when a new baby is born.” Scientists have since given it a new name – malnutrition.
I am not surprised that autism is in Ghana.
Click HERE to shop Totally Kids!
What: Earth Day Toy Recycling
When: April 22nd.
Where Totally Kids Fun Furniture and Toys 7876 Portland Ave. S. Bloomington, MN 55420
Why: To benefit the environment and families affected by autism.
Recycling is not just limited to items made of plastic, paper, and glass. Thousands of products, including toys, are thrown out every year that are still valuable to many people. This Earth Day, families are encouraged to donate their gently used and new toys to be “recycled” to families in need. Most notably, going to families affected by autism, a growing segment of the population particularly in our immigrant Somali community. The event is being coordinated by the staff at Totally Kids fun furniture & toys in Bloomington, and the toys will be donated to the locally headquartered non-profit organization Parents United Against Autism (PAA).
Managing Editor's Note: Our new contributing editor Abdulkadir Khalif is indeed a Father Warrior. Through his work with Parents United Against Autism, he has enlisted a local MN business to create an Earth Day Promotion. Read this letter from the Marketing Director for Totally Kids, a furniture and toy store in Bloomington, MN. Any chance we can raise enough money to send Mr. Dumas to medical school? You can email Mr. Dumas HERE. Better yet, check out the Totally Kids site HERE.
It would seem we are in the midst of a formative time for the fight against autism. The Minneapolis/St. Paul metro area is a significant battleground and with the recent “discovery” of the high prevalence of autism in the immigrant Somali community, the tide could be turning, but only if we take initiative.
I’m the newly hired marketing director for a children’s toy and furniture store in Bloomington called Totally Kids, and one thing I was made aware of immediately was that we get a steady, if not frequent, stream of parents coming to find toys and furniture that help their autistic child. Since my arrival, it’s become a focus of ours to declare the company as both a provider and advocate for parents and children of the autistic community and to get involved in a way in which we can make an impact.
By Tim Kasemodel
The Minnesota Somali autism study released on March 31st 2009 has created quite a stir, but not as much as it should. It creates a certain enigma, a conundrum of sorts. While it attempts to assure the Somali community that the Minnesota Department of Health cares for them and wishes the best for them, it gives them no answers to the questions they have been asking them for so long.
Why? Why us? they ask. Yes, the MDH admits the Somali community was right, that their observations were correct. It appears there are indeed more Somali children receiving autism services than other children. But the MDH makes the strange disclaimer that the data they used for this study is not actually good enough to say for sure one way or the other.
What? How much did the taxpayer spend on this study?
Managing Editor's Note: We are pleased to welcome Abdulkadir Khalif as our newest Contributing Editor.
By: Abdulkadir Khalif
On the last day of March 2009, the Minnesota Department of Health finally produced a report on the prevalence of autism in the Somali immigrant population of Minneapolis, Minnesota. It was obvious from the numbers that the issue of prevalence has finally been settled, and that there definitely is a cluster of autism in Minneapolis. The MDH arrived at these conclusions not from their own investigations but from that of the MN department of Education. These are the very numbers that the MDH initially doubted and which the CDC poured cold water on towards the end of last year. I would like to take this opportunity to congratulate and thank the MN Department of Education for leading the way in the fight against autism in Minneapolis and for showing, on their own, that they (the teachers) know better than the healthcare professionals that autism has a cluster in Minneapolis, especially amongst the people of Somali ethnic group. I hope that the MDH together with the CDC will now come down from the ivory tower and start planning on how to confront this epidemic.
(This is Abdimalik Khalif.)