We all know that autism is, by far, the most prevalent developmental disorder, (for some a disease), affecting American children. An astounding 1 in 54 American boys has autism. Only a small fraction of those with autism will fully recover and live a independent life. Given the seriousness of this situation you would think that Dr. Guttmacher would be well versed in all issues pertaining to autism.
Well you would be mistaken! I am not sure if it is arrogance or just disinterest that prevents Dr. Guttmacher from knowing much about autism. My guess it is a little of both. Prior to the start of the Congressional hearing on autism I asked Dr. Guttmacher if he would be staying to hear my father’s 5-minute testimony. Guttmacher answered, “No, I have got other priorities.” As if we have not noticed!
Still being asked to testify in front of Congress is an endeavor even the most entitled, jaded public servant would take seriously. But not Dr. Guttmacher! He seemed to arrive at the hearing with only the very basic understanding of autism and a prepared speech on the sanctity of our childhood immunizations. Obviously the latter being his main priority.
In high school I was an indifferent, lazy teenager. Ask my parents. I don’t think I ever took a textbook home to study. I did the minimum, did just OK and that was fine with me. However, I was a teenager, my failures impacted no one but me. Dr. Guttmacher is supposed to be leading the charge for autism research innovation and directs tens of millions of our autism research dollars. For Guttmacher to put such minimal efforts into autism is tragic.
We are all grateful to the Congressmen and women who reminded Dr. Guttmacher just why these hearings were being held. To Dr. Guttmacher’s surprise, no one in that room was remotely satisfied with the NIH’s research progress. Bizarrely, Guttmacher laid out a fanciful version of the NIH’s “exciting” autism related recent accomplishments.
Allow me to summarize Guttmacher’s breakthroughs:
1) Early diagnosis is a good thing!
2) Learn the signs campaigns are good!
3) Early interventions turn out to be better than late interventions!
4) Guttmacher has also supported dozens and dozens of genetic and genome autism projects
You are blown away, right? What amazing discoveries, what helpful research! Maybe if it was 1982.
Basically all Guttmacher’s exciting discoveries were a recitation of DECADES old information.
When a congressman asked Dr. Guttmacher to name one, just one, NEW intervention that the NIH helped to develop over the past decade- Guttmacher had no answer. The man truly has no idea, outside of his pet genetic interests, what is happening in autism research.
When it comes to autism, our ASD families deal with these bureaucrat scientists all the time. They basically cannot be fired and are accountable only to each, not the taxpayer. They just don’t seem to care, nor are they listening to the families they are supposed to serve. It was good for Congress to see up close and in person the challenges our families face when dealing with the leadership of the NIH.
Guttmacher mentioned that the NIH is holding town halls on the subject of autism research. What??? When and where??? I follow IACC very closely but this is news to me! I would love to attend an autism town hall discussion. What town hall in the past 3 yrs is he talking about?
Guttmacher also spoke about how hard IACC works. The NIH IACC staff (not Guttmacher) are dedicated, accomplished and have produced the most transparent IACC ever. It is also true that a handful of IACC members, none of them federal appointees, work incredibly hard. However, why did it take 8 months for the NIH to choose a dozen new committee members? Why is merely appointing IACC members such a low priority? This should have taken 1 month, not 8. Guttmacher claimed IACC held dozens of meetings over the past 3 yrs. Not exactly… Let’s be honest here. 2 in person meetings over the past year and a handful of conference calls are not impressive to anyone.
Here is the problem. Autism is largely environmentally caused. It is not a single gene disease like cystic fibrous. The director of the National Institutes of Health is a pioneering genomist. Dr. Collins appointed Dr. Guttmacher to the Shriver Institute. Guess what Dr. Guttmacher’s main interest is? You guessed it- genetics! Collins and Guttmacher are in love with the genome, genetics, the trail blazing technology….The NIH has invested the mother lode of autism research dollars on their favorite subject: genetics. The result has been abject failure. Even the Simons Institute now states that autism is 60% environmental in origin. Another autism research fact that I am sure would be news to Dr. Guttmacher. Despite overwhelmingly requests from the public Collins and Guttmacher refused to appoint even one environmental scientist to IACC.
Let’s think about this. We know over 50% of the autism is environmentally caused. However, Dr. Insel, Dr. Collins and Guttmacher refused to appoint even one of the many highly qualified environmental science nominees to IACC.
Guttmacher is stuck in his genetic comfort zone and his interests rarely stray from his professional specialty.
Here is a small list of Dr. Guttmacher’s publications:
The Genome Gets Personal
Genomic Medicine: A Primer
Realizing the Promise of the Genome
Welcome to the Genome Revolution
OK, you see a pattern here? I bet Guttmacher really believes genetics is the key to solving and or curing disease. That worked with cystic fibrous but it is definitely not working with autism. Not working- at all.
All the more reason people like Guttmacher should get out more and actually hold those town hall meetings and listen to families, attend an ARI conference, learn about the average ASD family’s research priorities. Too the amazement of our congressional leaders, Guttmacher really believes that the NIH is doing a great job and making meaningful progress. I really hope Dr. Guttmacher watches the video of the hearings, I have a feeling he rarely interacts with people who challenge him at all on the subject of autism.
I loved it when Congressman Meehan asked, “Who gets up in the morning and says, “I am driving this train! I am in charge of autism research?” Guttmacher stumbled and stumbled, mumbling, “Multiple parties are in charge, there lots of moving parts, IACC?” A real leader, the person sitting in that chair representing the entire NIH, would have said, “Me. I take responsibility. Clearly I have fallen short and will dedicate myself to addressing these failures.” That is what a leader would say. But no, Guttmacher made excuse after excuse and scurried out of the room like a mouse as soon as members of the public are given the opportunity to speak.
Besides Christian I am raising a typical 9 yr old boy. My husband and I hope to teach him that being a man means taking responsibility for your actions .