Katie Wright on IACC. Zero. Point. Zero.
By Katie Wright
OK, last IACC meeting of the year (rescheduled because of Hurricane Sandy.) Where to begin? Where to begin?
I just have to go with the CDC and the Somali study.
In 2008 The “Minneapolis Star” reported that there was an explosion of autism among Somali children. Indeed they cited preliminary data of 360 per 10,000 or 1 in 28 Somali kids in Minneapolis have autism. That is 5x the national rate! Astounding right? One would think that the CDC and the NIEHS would find this information compelling and immediately prepare to study the causes of this ASD cluster.
When there is an E. coli food poisoning cluster the CDC positively springs into action, leaving no stone unturned until they find the cause. The CDC immediately maps out a strategy, holds daily press conferences, and travels by helicopter to and from potential sources of the infections.
Even when there isn’t really isn’t an urgent public health crisis the CDC can be fast on their feet. Remember the avian flu outbreak in Asia? Again the CDC launched into action putting an emergency team together, sparing no expense. We all knew then and we know now that it is impossible for a human to catch avian flu unless a person literally slathers themselves in bird feces. Yet still the CDC found the money for a brand new avian flu wing in the CDC building.
However, when there is a gigantic and sudden explosion of autism in a major American city the CDC does nothing. That’s right, n-o-t-h-i-n-g. The CDC did want not to count the Somali autistic kids in the Minneapolis and they surely do not want to find the cause of the autism cluster.
OK, let’s go back to 2008. The Minneapolis Dept of Health and then Senator Norm Coleman, the Somali families and the entire autism community were urging the CDC to investigate the causes of the autism cluster. Guess what the CDC does? Nothing.
In 2009 there is another big article in the NYT about the explosion of autism among this Minneapolis refugee community. The Times goes on to state that most Somali children seem to have experienced autistic regression. Mother after mother discusses how their toddler was developing typically and then regressed after receiving multiple vaccines.
Still the CDC is doing nothing.
In 2010 at the Interagency Autism Committee meeting Lyn Redwood asks the chief of CDC autism research, Dr. Coleen Boyle, why nothing is being done to investigate this autism cluster. Dr. Boyle responds, “Well, I would not say we are doing nothing. Many action steps are being taken…we need more action steps and more data.” We still don’t know what these “action steps” entailed but it sounded like a whole lot of nothing.
Then, and you will notice a theme here, Dr. Boyle goes on to complain that it is difficult gathering data from Somalis due to “cultural sensitivities.” Obviously it is the Somalis' fault that the CDC has failed to do any real research.
The CDC does not hold a monopoly on institutional incompetence when it comes to autism. The National Institute of Environmental Health Sciences, as led by Cindy Lawler and Linda Birbaum, treat autism as if it is the most annoying thing in the world and wow do they like to steer clear! If it isn’t about “learn the signs, “ they are not interested. Considering that even the Simons Institute believes that autism is 50% environmental in origin, it stands to reason that the NIEHS would want to urgently explore the environmental factors behind this autism cluster.
But, no the National Institute of Environmental Health Sciences does nothing.
David Armstrong of the NIEHS was asked to discuss the autism cluster at that very same IACC meeting. Armstrong seemed unfamiliar with the most basic facts in the Minneapolis cluster and became oddly angry when it was suggested that the NIEHS had been nonresponsive to the crisis. There was a lot of grumbling by Armstrong how hard this work is, blah, blah. I guess those Somali families struggling with autistic children don’t know how good they have it! They could be doing “really hard” work if they were employed by the NIEHS.
Finally even Dr. Insel asked Armstrong if the NIEHS planned on investigating the causes of this cluster. Armstrong said, “no.” Armstrong said that Dr. Birnbaum thought about it and isn’t interested. That’s right, Dr. Birbaum thought about and decided that she was not interested. This is what happens when we have unelected public servants who refuse to listen to the public.
OK so here we are 3 years into this catastrophe and the CDC and the NIH are doing nothing. In 2011 Autism Speaks comes forward and basically says to the CDC that they will pay for part of the study just to get the research moving. It is so sad that in addition to our taxpayer dollars American ASD families have to personally fund urgent environmental public health research.
In what other industrialized country do citizens have to pay (post taxation $!) for their own environmental research into clusters of seriously disabled kids?
Dr. Marshalyn Yeargin-Allsopp of the CDC and Dr. Amy Hewitt of the University of Minnesota were scheduled to present their preliminary findings. Remember it has been near 5 years since this cluster emerged.
First we listened to a well-meaning but bizarre presentation by Dr. Hewitt. Listen, I think I speak for every family when I say I don’t want to hear about tiny minutiae of their every conference call since 2011. We only had 3 or 4 full IACC meetings in the entire year and we should not waste half an hour on phone log reporting. We need to discuss RESULTS.
These two just do not get it. Hewitt and Yeargin-Allsopp were smiling broadly, clearly very happy with themselves, the work of their teams and their research methodology. But in true bureaucrat form, guess what they did not discuss? RESULTS. As if we gave them these dollars for an interesting independent study project. No, the CDC and the University of Minnesota have the research money because the public urgently needs to know the number of Somali children with autism as well as primary causation factors.
So then guess what happened? Dr. Yeargin-Allsopp announces that there are no preliminary results at all yet. None. Can you believe it? In what universe and in what job does someone proudly report his or her failure? Yeargin-Allsopp seemed not to comprehend, at all, why her report was not received well. Lyn Redwood, Idil Abdul, Somali autism mom from Minneapolis, and others were clearly shocked by this ineptitude.
Any normal person would have said, “I am sorry we have fallen short, we will rededicate ourselves to working twice as hard in order to get these results to you as soon as possible.” But no. Dr. Yeargin-Allsopp gets angry! She lashed out at the room, “How many of you are doing a study like this? How many?” That isn’t the point Dr. Yeagin-Allsopp. You willingly took this on and made promises you did not keep and you refuse to take responsibility for your failure.
Once again, “the cultural sensitivities of the Somalis make this job so difficult “ whining refrain was repeated. Idil spoke up and basically said, I don’t understand your failure. Somali families are eager, so eager, to discuss this! The CDC workers are, supposedly, there to help solve this urgent problem; it isn’t like the IRS is banging on the Somalis doors. Idil emphasized that Somali families want to meet with CDC workers and help get this autism study done ASAP.
So let’s review. The CDC and the NIEHS did nothing, nada, zero, zilch to investigate this autism cluster for 3 years. Then finally when their back was pushed to the wall and autism families provided them with the money to do the research, the CDC undertook an autism prevalence and causation study in 2011. In 2013, the CDC promised, preliminary results would be able. There are no preliminary results available.
I mean, what is it going to take to see some consumer accountability at the CDC? Our families need and deserve better and smarter leadership, yesterday. Specifically we would love to hear from Dr. Tom Freidan, CDC president, on why his employees have no sense or urgency or commitment to our families.
I know Dr. Friedan’s main public health priorities include combating obesity and smoking. Do autistic kids need to get fat or start smoking in order to see any kind of meaningful research investment or leadership from the CDC? Why can’t the CDC meet the most minimal competency requirements when it comes to serving the autism community?
Katie Wright is a Contributing Editor of Age of Autism.
Me too, Kapoore - so tired of all that. Surely a lot of people must know - doesn't anyone besides the vaccine injured and their families have the courage speak out?!? Does Andrew Wakefield have to stand almost alone as the sole scapegoat? if a lot of people would speak out - some with serious credentials - they could not all be written off as inconsequential.
Posted by: Twyla | February 09, 2013 at 04:44 PM
I am tired of researchers that don't research politically sensitive material. I'm tired of big pharm which is no different than big tobacco of yesteryear. And I'm tired of doctors who refuse to ever speak of causality as if everything in the world is a giant mystery and accidental happenings are everywhere---you know things just happen and we don't know why. But what if they do know why and they are just not sharing that information. Isn't that evil?
Posted by: Kapoore | February 09, 2013 at 03:55 PM
One cannot expect the CDC to do an objective study of the Somali autism cluster. If what many of us are suspecting may be the cause of the problem is even somewhat close to the truth, asking the CDC, or any of its affiliated agencies, to do such a study would be like asking a fox to do a study of why hens are disappearing from a nearby farm. If it is at all possible that the CDC and/or vaccination policies and practices may have had something to do with this cluster, these folks are going to do whatever they can to cover their butts and direct the problem elsewhere. Some other, hopefully independent group(s), would have to do this study and they would need to listen to the parents of these children and take their observations into account.
Posted by: Aasa | February 08, 2013 at 09:34 PM
Just watched an Australian documentary ("The Autism Enigma") about autism clusters in Australian Somalian refugees. So it is not just in the U.S. There was a very biomedical-cure-literate Somalian former-refugee mother who was interviewed and she put a lot of it down to the fact that their natural diet in Somalia would have included whole foods and fermented foods. She didn't mention pharma or pesticides but it was mentioned in the documentary. Her knowledge about the benefits of the GFCF diet and other biomedical interventions was a lot better than some parents I've met and than other official autism bodies (.....not mentioning any names CDC or Autism Speaks).
Posted by: Randwick | February 08, 2013 at 08:05 PM
I have used an all natural protocol to alleviate many of the symptoms of autism in my soon to be 10 year old. I have tried to reach out to this community but have not heard back from them. If anyone can make that happen I would appreciate it.
Posted by: Maxautism | February 08, 2013 at 04:26 PM
Is it possible that these people, I mean the researchers charged with the task of finding the reason for autism clusters in Minneapolis, are simply unable to do what they are asked to do? Are they like ostriches sticking their heads in the sand or it it that they are working for the CDC and are really the victims of too many flu shots and other vaccines they believe in so fervently? Are they gradually losing their ability to perform mental tasks that in the past would have been child's play to perform? I sure hope that it not the case. Old Rome also did not know how to protect itself from lead and mercury. Those metals brought down the Roman empire. Are we in danger in this country? Oh, but I must be exaggerating. I do that all the time.
Posted by: Birgit Calhoun | February 08, 2013 at 04:24 PM
Not sure if it will work but a Pittsburgh PA news station is doing a report about larger than usual numbers of autism in their area. Will be aired tonight.
Posted by: Rileysmom | February 08, 2013 at 04:06 PM
How about someone who is good with numbers figure out what percentage of yearly income taxes goes to autism "research". Then everyone respectfully petition the government for a tax exemption for that percentage on the grounds that government appointees have squandered funding, failed to produce results and their activities do not provide the least slightest public benefit. Then put those funds toward independent research, primarily focused on environmental causes, and effective treatments.
Letting them know that we don't want to pay for this anymore would send a strong message.
Posted by: Linda | February 08, 2013 at 03:02 PM
I pray the American Somalis will continue to raise their voices about this travesty. Their families can provide the answers, if anyone cares to look.
Posted by: Les miserables | February 08, 2013 at 02:29 PM
March 12, 2012, the story, Ongoing study examines rates of autism among Somali children in Minneapolis, was published.
It showed that FOUR YEARS LATER, officials were still clueless about a higher prevalence of autism among MN Somalis.
“Is there a higher prevalence of Autism Spectrum Disorders among Somali children in the Twin Cities? In a word: maybe. According to a study published by the Minnesota Department of Health in 2009, there might be a higher incidence of autism, but the evidence is not complete.
“Now researchers at the University of Minnesota are trying to help find the answer to the question. With funding from the CDC, the National Institute on Health, and Autism Speaks, they began conducting the Somali Autism Surveillance study in July of 2011.
“According to the CDC, autism spectrum disorders occur on average in 1 of 110 children in the United States. The MDH study focused on the ASD programs through the Early Childhood Special Education Citywide programs that are part of the Minneapolis Public Schools. Researchers examined the percentage of three and four-year-old children participating in the ASD programs. This percentage, which they called “administrative prevalence,” was significantly higher for Somali children than non-Somali children."
So, it’s now 2013, where are the results of the study? Is the generation of Somali children with autism just more better diagnosing?
Posted by: Anne Dachel | February 08, 2013 at 02:06 PM
Thank you, Katie! The Somalis must not be forgotten.
David Kirby wrote this piece in 2008 about the Somali population and the autism epidemic. http://www.huffingtonpost.com/david-kirby/minneapolis-and-the-somal_b_143967.html
Likewise, I wrote this story after a meeting in Minneapolis to address autism among the Somalis in 2008 where David was also in attendance, http://www.ageofautism.com/2008/11/on-autism-somal.html
“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.”
Anne Dachel, Media
Posted by: Anne Dachel | February 08, 2013 at 02:04 PM
As always, the key to Autism research is to walk in circles and carry balloons and then send in the funds for more research.
The following year, the balloons are the same... but the walking is done in the opposite direction.
Posted by: cmo | February 08, 2013 at 02:00 PM
This quote from Upton Sinclair bears repeating until I'm blue in the face:
"It is difficult to get a man to understand something when his salary depends on his not understanding it."
This applies to WOMEN researchers, too! University professors know which side of the bread gets buttered. And it's the side that DOESN'T question the Politburo line on the innocence of ALL vaccines.
Posted by: Joe | February 08, 2013 at 01:17 PM
"Action steps", as opposed to real action, must be action that takes place only in the mind. It's clear that these agencies do not want answers. They don't even want to ask the questions and we all know why. There is no stopping their procrastination and obstruction. In order to get anything done, independent scientists will have to do the research. Unfortunately, those taking taxpayer funds to do this work will not do it. Waiting for them, trying to push them, is a waste of time. Even if they did start to move, their work couldn't be trusted.
Posted by: Linda | February 08, 2013 at 12:47 PM
Autism is a mystery and these alphabet agencies intend to keep it that way.
Posted by: Ted Van Oosbree | February 08, 2013 at 12:28 PM
So frustrating. Makes me think of Congressman Patrick Meehan's questions at the recent congressional oversight committee hearing:
"Who's in charge of this?!? Who wakes up every morning and says, 'This is my priority. I am going to drive this train and make sure something happens today?'" And he asks where is the dynamism in using emerging evidence to hurry to a discovery? The CDC and NIH folks respond with pathetic pablum. Dr. G. says there has been an "acceleration" in recent years.
starting at 01:15:46
They could make headway if they wanted to. They are stalling and fudging. And nobody outside of the autism-vaccine-injured community seems to be paying attention. Where are the investigative reporters? Snowed in by govt spin and pharma ad money.
Thank you Katie and Lyn Redwood and Idil Abdul for being there! Your advocacy takes tremendous patience and persistence. Thanks for writing about this Katie - otherwise it wouldn't see the light of day.
Would love to see the congressional oversight committee question the IACC members.
Posted by: Twyla | February 08, 2013 at 12:01 PM
Very reminiscent of Brick Township, NJ. Our federal agencies are a complete disgrace and an utter waste. To think that we, the taxpayers, spend BILLIONS of dollars to fund agencies to protect our health, yet they do nothing but destroy our health...it's horrid.
Posted by: Laura Hayes | February 08, 2013 at 11:49 AM
I remember reading a news story a while back about Dr. Wakefield meeting with Somali families and offering to coordinate research into their astonishing autism rate. My recollection is that shortly thereafter BMJ published Brian Deer's hit piece on Wakefield.
Posted by: Carol | February 08, 2013 at 11:29 AM
I have met Somali parents and their convictions and concerns are the same as the rest of ours, only in larger proportion because their number are huge. The ones I've met are convinced that vaccines led to their child's autism. But what they see is a statistic that is somewhere closer to 1 in 20, or 5 % of their kids. They make up 12% of autism kids in the school district, even though they are only 6% of the local population.
I met Dr. Yeargin-Alsop at a conference about ten years ago. Her capricious nature and nonchalant approach to autism is still evident today. For parents who are screaming "the house is on fire", Yeargin-Alsop is saying "Okay, I'll go spit on the flames." It's maddening to realize how much time and money she has wasted and is still not gone from her position.
Posted by: Mary R. | February 08, 2013 at 11:00 AM
SOME THINGS NEVER CHANGE......
"The Minnesota Somali Autism Study: That and a dollar will buy you a hot dog."
From the article four years ago:
"The Commissioner of Health Dr. Sanne Magnan started her media briefing with the basics of the study, moving on to a series of shameless self-congratulatory remarks about how the hard work and sincere efforts of many agencies combined into a collaborative effort to get to the bottom of the concerns of the Somali community. She mentioned that the MDH had met with “members of the Somali community” the day before, as if she was implying that the whole community was happy with the study. Then she ended it with the unbelievable clarification that the study means essentially nothing at all, no real conclusions were established. In the end, the answers to the questions from the Somali community were never answered.
I wondered how the MDH could ever expect the Somali families to believe they sincerely want to help when the MDH can look at this study and say it does not mean anything. A representative of the Somali organization Parents United Against Autism was in attendance. He left early in part because he was upset about the comment where the MDH met with “members of the Somali community”. He knows that that community only includes those Somalis who step in line behind the “It can’t be vaccines” mantra. If the MDH were being sincere, they certainly would have invited the group at the frontlines of the Somali autism cluster – those who answer the phone calls from scared parents begging for answers to help with a child so difficult to understand."
Thanks Katie for the synopsis of yet another meeting full of "shameless self-congratulatory remarks".
Posted by: Tim Kasemodel | February 08, 2013 at 10:12 AM
Katie; great article.I think they have had so much praise internally for doing nothing that they really had not expected that anyone would call them to account.
I hope some of them read this and realize how they personally are going to find it very hard to defend their actions when questioned about them in the future. And the future is coming.You can't hide that many effected people under the rug. Its no longer a rare disorder, and the financial implications are starting to become obvious.
Because they are refusing to look at causes, they won't take the kind of actions that could reduce the numbers in the future.Instead they keep adding to the vaccine schedule and hoping the numbers will go away.But the numbers just keep going up.
In a way they are trapped because of their past history of denial.
Posted by: Hera | February 08, 2013 at 10:00 AM
The "hardest" part of Yeargin-Allsopp's job is conjuring up explanation after explanation .. for not doing her job in the first place.
There is no doubt the CDC has the expertise, data and resources to conduct this critical study of "regression" in Somali children .. they lack only the WILL to do it.
Their lame excuse is .. "its just too darn hard to do". Obviously, by their own "self-admission" they are not qualified to "do the job" they were hired to do.
An honorable person would "do the right thing" .. and voluntarily resign if they cannot do their job
If they were plumbers or electricians .. they would .. rightly so .. be FIRED if they told the boss their job is "too hard to do".
So, it begs the question: Who in god's name do these people ANSWER to?
Where is the President? Where is Congress? Where is the Senate? Shame on the lot of them.
Posted by: Bob Moffitt | February 08, 2013 at 09:49 AM
This is really a fascinating piece which would be funny if it wasn't so tragic. I think that the only way for these Somali parents to get anywhere is to make a lot of noise as a group. As immigrants, they may feel timid about doing this, but perhaps with advice from political organizers they would gain the confidence required. I highly suggest viewing the Oscar nominated documentary How To Survive a Plague in which the CDC tried the same bull with AIDS. I think if you get a large group of really angry parents with a bullhorn that might help light a fire here. I really do. Anyway, great reporting.
Posted by: Lisa | February 08, 2013 at 09:25 AM
I think the problem starts at the top of HHS and works its way down. Get rid of Sebellus and put Dave Weldon in charge. Then we would see some results.
Posted by: Jeff Stone | February 08, 2013 at 09:19 AM
Great job Katie, they are probably redoing the results of the causation study so that its suits their agenda, which is to disprove the vaccine/autism link just as they always do.
Posted by: Victor Pavlovic | February 08, 2013 at 08:50 AM
Katie, great article as always. I always appreciate your honest take on the complete incompetence of the IACC. The CDC continues to drag their feet for one basic reason --- they are wholly complicit in the autism tragedy. What will it take for someone in a position of power to have the balls to make the changes required to get answers to these long overdue questions?
Posted by: Mike | February 08, 2013 at 08:43 AM
Katie - Same old, same old. I absolutely cannot stomach this ridiculousness! I love it when they try to turn it around and defend their "hard work." Just spend a week with an AI family - then you can talk about "hard work!" Thanks for the laugh -
Posted by: Jill | February 08, 2013 at 08:42 AM
Thank you for the report on how inept our federal agencies are in the matter of autism research and investigation. As the Dean in "Animal House" in the clip states 0.0, that is the grade given to the CDC by the public. Correction, in regard to Simpsonwood and Poul Thorsen that would be -0.0!
Posted by: Jim Thompson | February 08, 2013 at 08:27 AM
Disgusted but not surprised.
Maybe they're finding things they don't want to report? Hmmmm...
Appreciate your reporting, Katie.
Posted by: Michelle | February 08, 2013 at 08:02 AM