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.