“We just listened to a very lengthy speech and I would like to ask a question,” I said into the microphone planted in the aisle of the auditorium (ostensibly so people COULD ask questions.)
OK, but whose fault is that? Why is this guy yelling at me? Is it my fault he talked three times longer than he was scheduled? Is it my fault he allowed Dr. Boyle from the CDC drone on for almost an hour, double her allotted time?
The Mt. Sinai conference environmental science in autism and learning disorders was both incredibly bizarre and disappointing.
Sorry to Kristen, Mary, Lisa, Kim, Katie and everyone who got babysitters and traveled from outside the city to attend. If I knew the day was going to be one long diatribe, with no time for questions or discussion I never would have encouraged you to attend.
Initially I was really encouraged that Mt. Sinai, totally AWOL in ASD environmental research was holding an environmental science workshop. Great! I was also very pleased that Autism Speaks was a sponsor and made it possible for parents to attend the event for free. That was a terrific idea.
When I arrived I read the agenda. Dr. Landrigan (good), Dr. Linda Birbaum form the NIEHS (OK), Dr. Coleen Boyle from the CDC (why- they are like the same person), Dr Irva Hertz Pinchero (great!), someone from the National Children’s Study….lots of bureaucrats.
Dr. Birbaum gave a great sales pitch for the NIEHS. This committee, that committee, agent orange, gene + environment….Lots of nonspecifics. To be fair Birbaum did do an excellent job in conveying the dangers of anti-flammable toxins in our clothes and mattresses. She illustrated the ubitiquous nature of unregulated toxins well. Birbaum spoke about the fact that pesticides for commercial use need not undergo ANY consumer safety testing and how that had changed in Europe but not in the US.
Birbaum was conveying a sense of interest that I normally find missing at IACC. But then she got to the Somalis. Almost 3 YEARS ago Lyn Redwood raised the issue of the Somali ASD cluster in Minneapolis. The autism community had urged the CDC and NIEHS to thoroughly investigate potential environmental triggers behind this cluster. Somalis have 17x the rate of ASD as do non Somali Minnesotans! Most Somalis point to over vaccination as the trigger.
What has the NIEHS done about this astounding Somali cluster over the past 3 years- a whole lot nothing. But today there was talk of NIEHS’ vague partnerships counting the population as well as other unspecified activities. OK, I will believe that when I see it. Birbaum would not say “cluster” nor did she share the fact that they have 17x the typical rate of ASD. No Birbaum said “there seems to be an autism issue…more autism among this population…something they are seeing in Sweden too.” What I inferred from that comment was; one: a clumsy effort to minimize this thusfar ignored prime opportunity for environmental science research, and two: a deliberate effort to downplay the idea of a cluster and three, pass the buck to Sweden.
Somalis are over vaccinated in Sweden too! It is the same story. Most Somalis are vaccinated as infants, later in refugee camps and again once they reach their new country of origin. Sometimes they are vaccinated three times for the same disease. Why not address this huge opportunity for research on environmental triggers?
No, Dr. Birbaum was far more excited to talk about the genome and epigenetics as well as environmental triggers like smoking and alcohol consumption. Can we please save these discussions for people would benefit from such knowledge? Maybe there are Americans who do not yet know that smoking and consuming alcohol during pregnancy is terrible for a fetus – but this wasn’t the group. I would further hypothesize that ASD mothers who engaged in these activities comprise a minute % of the population.
I saw Dr. Ken Bock in the audience. Bock is an incredible DAN! doctor and author. He treats children all over the world and has a large practice in . Finally Dr. Birbaum really hit upon something talking about how she is finding disturbing evidence of strange bacteria in the gut of ASD kids. No kidding! If only Dr. Bock or one of the many knowledgeable parents of “gut affected” kids had been allowed to address this issue! But no questions-remember.
Dr. Coleen Boyle of the CDC spoke for almost an hour, at least a half hour longer than her scheduled talk. It was unbearable. Dr. Boyle read off about 50 slides, none of which conveyed any new or insightful information. Boyle fondly reminisced that she had attended a similar autism conference at Mt. Sinai TEN years ago and what “tremendous progress” they have made since. What??? The CDC- has made tremendous progress in autism research? Ten years ago autism affected 1 in 250 kids, now it affects 1 in 110. Millions of children and families are devastated, bankrupt, living in pain, hopeless or constantly at battle with their insurance companies and boards of education. There is not end in sight- ASD is rising over 10% a year! This is the CDC’s idea of “tremendous” progress?
There was no sense of urgency whatsoever in Boyle’s speech. Instead Boyle urged the audience to “learn the signs” and act early! We know and we did. Boyle went into lengthy detail about the CDC’s PR campaign to diagnose autism early and how new materials were being created. It was torture.
Over and over again Boyle spoke about how important autism research is to the CDC and how they work closely with the community. Now that was news to me. I wanted to ask why if the CDC considers autism research so important, why do they spend only $22 million a year on ASD while 100s of millions on avian flu and even more on H1N1? It is a fair question but naturally I was not allowed to ask it. I also wanted to ask about the CDC working with the ASD community? Since when? Where? With who?
Revisiting these lectures is exhausting me. I will finish the second part tomorrow.