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IACC Part 2: The Somali Autism Clusters and More

Posted Nov 22 2010 12:00am

Sos-500 By Katie Wright 

The afternoon started with Dr. Gerald Fischbach, the scientific director of the Simons Institute. Gerry approached Wendy Fournier after our community meeting with Dr. Francis Collins in order to learn more about biomedical treatments. He was very friendly and genuinely interested in biomedical interventions. Maybe this is a sign of change? One wishes that given its tremendous resources that Simons would have a more diverse investment portfolio. They lead the nation as a private nonprofit in brain and genetic ASD research but conduct almost no biomedical treatment or environmental research.

Dr. Steven Scherer of the International Genome Project spoke about “Translating Genetic Discoveries into Diagnostics.” As I stated earlier translating needs to begin at home by working with the community of families. My husband and I had to travel to 4 states to get a diagnosis for my son’s co-morbid medical problems. How can this diagnosis discussion take place without representation from national ASD advocacy groups? Don’t the researchers need to know what kind of diagnostics our kids need, barriers currently in place, problems with hospital care and testing issues? Wouldn’t it be helpful to hear from a diverse body of parents, many of them doctors themselves and parents of medically affected ASD kids? Dr. Scherer said stakeholders were in attendance but no one I know from national advocacy, research and service orgs like NAA, SafeMinds, Generation Rescue or TACA who was invited. These groups are on the front line, helping families and kids with diagnoses, medical issues, physician referrals, interpreting laboratory results and providing cash grants everyday.

I heard a lot of talk about CNVs and the value of generating information for genome research and the importance of generating research for laboratories but almost nothing about diagnostics other than early identification. Yes there was some discussion about a possible genetic test for GI disease but we already have SO many incredible GI research proposals just dying on the vine! I am dying to see more of Dr. Arthur Krigsman’s GI research on clinical interventions.  I would love to see an investment in Julie Matthews pioneering work in essential nutrition for the ASD gut. Over 1 million ASD people are suffering from GI disease. They don’t need a genetic test to confirm what they already know, they need to see research dollars invested in biomedical interventions, today.

I just do not understand David Armstrong. But then again I don’t understand much about the National Institutes of Environmental Health and their attitude towards autism and autism research.

In the group discussion Lyn Redwood brought up the need to more energetically investigate the Somali autism cluster in Minneapolis. Lyn asked the Dr. Coleen Boyle, the CDC representative why more isn’t being done to figure out what is going on?

Dr. Boyle responded by stating, “number of action steps are being taken.” They are examining “cultural sensitivity issues (which if anything would point to ASD being vastly undercounted in the Somali community)”, they are “updating our data…taking more steps to see more data”... the MN’s Dept of Health is also taking a number of action steps, “looking at the context of data…so I wouldn’t say nothing is being done.” Well other than “action steps” what exactly IS being done to isolate the environmental factors clearly causing this explosion of autism? Sounds like a whole lot of nothing.

Worse there was some Somali blaming. Don’t you love it when scientists go right to the “autism is caused by inbreeding” argument? My husband and I were asked if we were related, I kid you not, like 5 times. It is as if certain researchers cannot wait to get to the autism = mutant parents hypothesis. How many of us are really married to our cousins? Nevermind, I don’t want to give anyone ideas!  Some might actually try to spend a million dollars studying this nonissue.  Don’t these Somali families deserve a lot better than this? They come to this country for a better life, a chance for a decent life for their families only to see 1 in 50 of their children develop autism. The ASD Somali kids are also disproportionately affected with severe autism. My husband and I enjoyed nice standard of living pre autism but severe autism wiped us out. How on earth do families new to this country, struggling to survive, manage? Why isn’t the CDC or the NIEHS doing more to work with the Somalis and figure out what is going on?

American Somalis in Minneapolis have been pleading for help and for a substantive federal investigation into the causes of this autism cluster. All they have received in response are condescending lectures by the MN Dept of Health and reassurances that over-vaccination cannot be the cause. Remember Somalis are routinely vaccinated in overseas refugee camps and often re-vaccinated here for the same diseases. Minnesota has a generous public health system and encourages Somalis to get re vaccinated if they have no records of previous vaccinations (refugees are rarely in possession of all their medical records). The situation is a nightmare. Somali Moms and Dads have talked about seeing their typically developing sons get multiple vaccines (for diseases they have already been vaccinated against), develop fevers, become ill and regress into autism. No one at the CDC or the NIEHS is doing anything but counting the number of affected children- and guess what they have determined- way too many Somali kids have autism. OK we already knew that, now what?

Tom Insel turned to Dr. David Armstrong, the representative of the Natl. Institute of ENVIONMNENTAL Health and asked him what the NIEHS was doing to investigate the environmental  causes of the Somali cluster. Let me emphasize that I did not ask that question, Lyn did not ask that question, Tom Insel did. It wasn’t a set up. I am sure Dr. Insel asked Armstrong about what the NIEHS was doing to investigate the Somali cluster because he naturally assumed the NIEHS would be involved. You will not believe what Armstrong’s response was. Nothing. They are doing nothing. Even Insel was incredulous and pushed Armstrong further asking “really?” Armstrong replied that Dr. Linda Birnbaum “was thinking about it” but apparently decided to do nothing.…not even some busywork “action steps” – zero. I am sure Armstrong felt the consternation in the room before he said that he “would make a note to ask Linda” if she still intended to do nothing. Great plan. I feel so reassured.

So many researchers are beyond themselves with excitement about studying the 2% of ASD kids with Fragile X, but everyone is ignoring a huge cluster of American made autism right under our noses. Why is that? Why are they afraid?

Lyn Redwood asked (as I am sure everyone listening wanted to ask) why federal representatives have not risen to the job. Why are they failing/refusing to investigate the environmental causes behind this cluster? Any person with common sense would just flat out admit they screwed up, they have not responded the way they should and their agencies will rectify the situation asap. How can you justify doing nothing at the NIEHS? You can’t and if you try you look like a fool.

But wait things got worse. David Armstrong, remember he is there to advocate for environmental science announces that sometimes there is just too much going on and things get complicated and that you have to wait for more information. Then Armstrong expounds on how excited he was by the speed of recent genome findings. What? Is Armstrong saying he believes in waiting until more genetic research is done before investigating the Somali cluster or that investigating the cause of the cluster is just too darn hard so why try? Your guess is as good as mine. This is Dr. Cindy Lawler, Dr. Birnbaum and the entire NIEHS’ attitude towards autism research in a nutshell. Do nothing or as close to nothing as possible, complain how complicated everything is and do NOT, no matter what, get involved with stakeholders.

Dr. Dawson of Autism Speaks advocated that the CDC actually go talk to Somali ASD community in Minneapolis. This is such a unique opportunity to ascertain to ascertain causation issues! Lyn Redwood asked why the bar set so low for environmental research when it comes to autism. If the CDC can land helicopters in shopping market parking lots to immediately investigate an EColi outbreak why do they turn into “team give up (my words)” when it comes to autism?

Once again smart thing to say is you are right, we will do better. But no, David Armstrong got  defensive. Armstrong replied that the CDC and the NIEHS know what causes E Coli and that they could get to the bottom of things quickly (therefore they try hard?). Autism has many causes so why bother to go to Minneapolis and study the cluster at all?

Last year the CDC spent $400 MILLION to screen and test for STDS (for diseases people might or might not have). Last year the CDC spent $75 MILLION on smoking cessation programs. As worthy as these endeavors are they are all treating preventable health problems- unlike autism. Under the category of insanely wasteful spending the CDC spent almost $3 BILLION dollars on the non-existent avian flu crisis. Only if one sleeps in a bed smothered in bird fowl is this a problem.

Don’t even get me started on waste at the NIEHS, but OK if you insist. Senator Grassley (my hero) has lead a number of investigations into corruption within the NIEHS. In 2005 it was discovered that NIEHS director Dr. Schwartz used limousines to run personal errands and acted as a paid consultant for asbestos companies, earning $150,000 while heading the NIEHS. Dr. Schwatz also spent $2,000 of our money in order to frame his high school diploma.  Nice. So apparently The NIEHS can make time and find the money for all sorts of strange little projects, they just have no interest in investigating the largest autism cluster in the nation? Studying autism is just too hard?

I live in New York City. I really don’t spend any time worrying about terrorism but it is a fact that we just don’t know when, if or how we could experience another terrorist attack. Nevertheless the CDC immediately invested tens of BILLIONS in special gear and readiness plans IN CASE something does happen. I am sure that is a fine idea but guess what? Something is happening right now in this country, an autism epidemic and the CDC is doing nothing except counting the number of lives autism have been ruined. Armstrong  of the NIEHS complains that this work is “so hard.” Are you nuts, I wanted to ask? The autism epidemic is hard for people with autism- not you. The CDC and the NIEHS are not the victims here. They need to stop feeling sorry for themselves and start doing their job, do it well and actively investigate the environmental causes of this cluster- including over-vaccination.

I have been hounding Autism Speaks for 2 years to get to Minneapolis and talk with ASD parents in the Somali community and dig in to the over-vaccination issue. To my knowledge that has not happened. Instead AS has been working with the CDC (frankly that frightens me). AS doesn’t need useless bureaucratic partnerships they need experienced environmental scientists working with the Somali community.

Ari Ne-Man asked some good questions about how to provide Somalis with better services and what is being done to assess the needs of these children now. Tom Insel urged the committee to make addressing the causes of this cluster a priority and asked for a specific plan. I really wish the other public members had spoken out in support of getting to the bottom of Somali autism cluster crisis. That is their role as public members, to support the public interest, especially when the federal memberships are not doing their jobs. That is why they are there. That is why so many of us fought so hard in order for community representation seats.

I would love to hear any feedback from Somali ASD affected families in Minneapolis. What do you think is about what is happening and what kind of help and research would you like to see get done?







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