Dr. Alan Guttmacher and the Genetic Comfort Zone
Dr. Guttmacher is the Director the Eunice Kennedy Shriver Center Institute for Child Health and Human Development.
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 .
"WHEN will these people be removed from their "leadership" positions?"
We can remove them NOW. Expect NOTHING from these drones; IMO don't even bother to read their pap. We can PROTECT our kids NOW.
Start with NOT VACCINATING; pass on this DO NOT VACCINATE message to all those who need the message.
Posted by: Lou | January 23, 2013 at 01:37 PM
Benedetta as they say the biggest serial killers are out and about us wearing white coats..never a truer word...SHAME ON THEM!!
Posted by: ANGUS FILES | January 22, 2013 at 06:32 PM
"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"
He did not want to face his victims.
He is not lazy! He is not dumb! He is not naive!
"If you had caused autism to rise 600% wouldn't you deny it!" J.B. Handley
Posted by: Benedetta | January 22, 2013 at 02:00 AM
Also Guttmacher well knows what autism is.
What he is is a white collar crimnal.
White collar crimnals like to pretend their crimes are victimless crime.
Posted by: Benedetta | January 22, 2013 at 01:48 AM
In Australia research has begun on identical and non-identical twins. I am a non-identical twin.
At a glance the research seems harmless enough, or it is more sinister than that.
Will the Genetic interpreters mistakenly uncover an underlying disorder (which I may or may not have)and argue their case that my sons Autism is actually genetic and disregard environmental factors?
@ Bob Moffitt,
My severely Autistic, low functioning, non-verbal 11 year old son started puberty before he turned 10. My husband cannot believe how he has developed at such an early age. He DOES NOT remember developing this young.
Posted by: AussieMum | January 21, 2013 at 10:52 PM
And his new book
"Gee-Nom Body in the Autism Community Likes Me Now."
Love this piece, Katie,
Posted by: Maurine Meleck | January 21, 2013 at 08:52 PM
WHEN will these people be removed from their "leadership" positions?! Will this entire generation have to be compromised before these people are summarily evicted and replaced with leaders who have the critical compassion and intellectual curiosity requisite to truly examine the evolution of this crisis, dig-up its roots, and turn-over the field of practice to assure the children born going-forward grow strong, healthy, and free of pollution?! I am so disgusted by this blatant disregard for the health and welfare of our country's future!!!
Posted by: Liz Parker | January 21, 2013 at 06:46 PM
For me the Brigham and Women's heart/genes study is really telling as to how useful genetics are as predictors of a medical problem. Over a 12 year period, 19,000 women were followed as to 101 gene-related heart variables and none of these were found to be reliable in making predictions as to health outcomes for these women! That's pretty damning evidence against genetics as being so helpful in terms of health. I also read through the comments section so that I could gather more insights in terms of pros and cons and pretty much found that many people said that genetic maps were interesting for science but not so much useful for health.
The other really funny thing was that when I was down a ways into the comments I was really taken with the similarity (both in credentials and tone) to a certain "littlelady."
Posted by: Jen | January 21, 2013 at 05:30 PM
You are so correct, autism isn't a single gene disease like cystic fibrosis is. Both Collins and Guttmacher have to know this too - there is never an epidemic of a genetic disease and they know this.
But, let's pretend that autism was studied and managed the way cystic fibrosis has been. If that were the case, then the fund raising that was done would have been invested in valuable, progressive research. Private fund raising would have worked hand in hand with the government and pharma to make new discoveries that IMPROVED peoples lives. Because of the vision of the Cystic Fibrosis Foundation there are drugs available that have dramatically increased the life expectancy of a person with cystic fibrosis and improved daily life. It is no longer considered a pediatric disease, meaning over 50% of the individuals affected are over 18 years old - that is a big deal.
But here is the other thing about putting all the eggs in the genetics basket. The cystic fibrosis gene was discovered in 1989. Since then over 1200 mutation have been discovered. What hasn't been discovered is a "cure". Only last spring did a new drug come out that works at correcting the defect in about 4% of the cystic fibrosis population. So, even discovery of the gene does not insure a "cure". How long has the breast cancer gene been identified? Do we just stop all other cancer research and only fund research for a "cure". Of course not, in any other situation research is done to look for ways of improving life/treating an illness at the same time as genetic work may be taking place.
If the only research done on cystic fibrosis was genetic, then children would still be dying of cystic fibrosis as toddlers (or younger) and none of the other life improving discoveries would have been made along the way.
Collins and Guttmacher and all of the others have to know that playing the genetics only card does nothing but continue the suffering/damage for many, many decades to come. Shame on them all for ignoring the suffering right before their eyes -
Posted by: The genetic fallacy | January 21, 2013 at 02:43 PM
I just went to high school to eat lunch... but I try to be more constructive now.
Should Congress have an interest, they could call up all those at Simpsonwood meeting and ask a few questions. Someone, somewhere should be in prison for that illegal CDC event.
They then need to place all the CDC / VAERS data out in the open for others to evaluate... for Autism, SIDS spikes and a few other issues.
Posted by: cmo | January 21, 2013 at 01:53 PM
All of these people are suffering from the same disease of Lance Twist your Armstrong. It is win at all costs medicine they are practicing.
Posted by: billy joe | January 21, 2013 at 01:34 PM
Despicable, pathetic, grossly irresponsible.
I sure hope that this Congressional committee will pursue these issues.
Posted by: Twyla | January 21, 2013 at 01:14 PM
Thank you Katie. Our children have been misdiagnosed with a psychological/behavioral disorder instead of a medical condition. I have been saying this since 1998. Autism is medical - its complex multi-system neuro-immune damage. We need to get the medical needs of our children screened and treated. The attrocity by injection has to stop. We need to influence the medical profession, sue them for misdiagnoses, and insert procedures into mainstream practices. And we need to get rid of anyone creating a barrier to helping our children. This has to stop. In the 1950s, asthma was considered a psychological disorder. See ya at I-YAK!
Posted by: MotherofPossibility | January 21, 2013 at 12:59 PM
Off the subject I know - but just want people to see this :
That vaccine-induced herd immunity is mostly myth can be
proven quite simply. When I was in medical school, we were taught that all of the childhood vaccines lasted a lifetime. This thinking existed for over 70 years. It was not until relatively recently that it was discovered that most of these vaccines lost their effectiveness 2 to 10 years after being given. What this means is that at least half the population, that is the baby boomers, have had no vaccine-induced immunity against any of these diseases for which they had been vaccinated very early in life. In essence, at least 50% or more of the population was unprotected for decades.
If we listen to present-day wisdom, we are all at risk of resurgent massive epidemics should the vaccination rate fall below 95%. Yet, we have all lived for at least 30 to 40 years with 50% or less of the population having vaccine protection. That is, herd immunity has not existed in this country for many decades and no resurgent epidemics have occurred. Vaccine-induced herd immunity is a lie used to frighten doctors, public-health officials, other medical personnel, and the public into accepting vaccinations.
The deadly Impossibility of herd immunity through Vaccination, Dr Russel Blaylock.
Posted by: Farmer Geddon | January 21, 2013 at 12:45 PM
The further all of this goes - it seems to be all tied into lipid metabolism
linking it to the diabeties epidemic.
All these illness maybe finally coming together to tighten a noose around such as the head of the NIH's neck.
Is it so wrong that I so hope that Congress with get list of names of years past and bring them forward to at least embarass ---- I don't know what I want -- some recognition that they did a horrible wrong - and thier names will go down in history as evil?
Maybe like the Veitnam wall - on a Wall of Shame?
I would like that, and they all that are still living should go there and trace their own names with thier fingertips.
Posted by: Benedetta | January 21, 2013 at 12:37 PM
Thank you, Katie, for this reminder of how little health officials really care about autism.
I started to write a reponse, but it got too long so I posted it on my blog: http://annedachel.com/2013/01/21/9513/.
I wonder if Guttmacher was surprised that the representatives didn't agree that NIH/CDC/IACC were doing a great job dealing with autism.
I wish Guttmacher and Boyle had been forced to answer the simple question: "Do you consider autism to be a national health crisis?" Neither of them did. I'm sure it's because there was a directive sent out long ago---no one, under any circumstances will ever admit autism is a crisis.
Guttmacher still hasn't figured out if the increase is real. That's about as pathetic as it gets. What if the country had dealt with Pearl Harbor or 9/11 like they deal with autism? Autism is a national emergency.
We can't continue on this path of cover-up and denial.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | January 21, 2013 at 12:29 PM
Gutmacher is not lazy, he is just payed to look the other way.
It is no mistake that Collins, Gutmacher, Insel are where they are.
These people represent best the interests of pharma.
Posted by: Cassandra | January 21, 2013 at 11:32 AM
Alan Guttmacher of the NIH sat beside Kathleen Boyle of the CDC at the congressional hearing. Neither really answered any questions. Here is a question for congress. Why is the CDC charged with promoting vaccines when vaccines are a commercial enterprise?
Posted by: Jim Thompson | January 21, 2013 at 08:31 AM
Just love one of these so called experts to drink the recommended shots for children and monitor them afterwards...and the drinking isn`t so bad as injection...not one of them ever comes forward to the Jock Doubleday offer..why? Why?
Posted by: ANGUS FILES | January 21, 2013 at 07:33 AM
Katie, thanks. The IACC meets next week to finalize updates for their “strategic plan”. Since last July I have submitted several comments pointing out that the plan needs a focus on (1) the very characteristic language disorder, (2) the neurological (brain) impairments that prevent normal language development, and (3) causes of such brain impairments.
In 1969 my son was 5 going on 6 and spoke only in echolalic phrases with “pronoun reversal”. He had been kicked out of kindergarten because they told us they were not prepared to work with children who couldn’t speak. So much for autism just not noticed decades ago.
In 1969, I went back to school, BU School of Medicine. I based my dissertation research on articles then current on brainstem patterns of injury (auditory nuclei, oculomotor nuclei, basal ganglia, and thalamus). I published 2 papers based on my research, one on echolalic speech (Arch Gen Psychiatry 1975 Nov; 32(11):1439-46). In PubMed if you search for autism loci, it is first (last page) of 294 citations. I discussed loci in the brain, not genes on chromosomes.
Brainstem centers, auditory & oculomotor nuclei, basal ganglia, and thalamus should have been investigated decades ago, and the vulnerability of these sites (loci) in the brain to oxygen insufficiency at birth and perinatal exposures to chemical substances. I was unable to obtain funding for postdoctoral research, so returned to my earlier profession, software engineering. Neglect of language and underlying brain impairments may be deliberate. The potential dangers of obstetric and perinatal interventions are taboo.
Posted by: Eileen Nicole Simon | January 21, 2013 at 07:20 AM
"Here is the problem. Autism is largely environmentally caused. It is not a single gene disease .." .. yet .. inexplicably .. "the NIH has invested the mother lode of autism research dollars on their favorite subject: genetics. The result has been abject failure."
From today's Philadelphia Inquirer: "Thousands of chemical pose risk to health"
"In testimony before a Senate subcommittee, Ken Cook spoke passionately about 10 Americans who were found to have more than 200 synthetic chemicals in their blood. The list included flame retardants, lead, stain removers and pesticides the federal government had banned three decades ago.
“Their chemical exposures did not come from the air they breathed, the water they drank or the food they ate,” said Cook, president of the Environmental Working Group, a national advocacy group.
How did he know?
The 10 Americans were newborns. “Babies are coming into this world prepolluted with toxic chemicals,” he said."
Imagine that .. "newborn babies" .. are born with more than 200 synthetic chemicals already polluting their fragile bodies .. and .. it is official government policies to then immediately inject MORE chemicals into these pure innocents .. beginning with the HEP B within hours of birth.
Instead of squandering critical research funds to satisfy the personal curiousity of Dr. Guttmacher and his equally selfish professional colleagues .. those monies should be devoted to studying the ENVIRONMENTAL sources threatening the future of mankind itself.
Consider .. yesterday it was reported that children as young as TWO are developing pubic hair. That cannot be a GOOD sign for the future of today's generation.
Posted by: Bob Moffitt | January 21, 2013 at 06:42 AM