On Saturday, Story Landis, PhD, director of the National Institute of Neurological Disorders and Stroke, an agency of the National Institutes of Health, abruptly resigned from the federal government's premiere autism research panel - the Interagency Autism Coordinating Committee (IACC) - citing embarrassing notes she had left behind at a recent meeting.
But now, the Director of the NIH, Francis Collins, has come forth to blame "tension and a lack of trust," (presumably among autism parents) for forcing Dr. Landis's resignation.
Dr. Landis resigned from the powerful panel on Saturday after the Age of Autism blog published handwritten notes - assumed to be written by Dr. Landis - speculating on the motives of an autism mother and IACC member, Lyn Redwood - who wanted research into autism as a multisystem biological disorder, as opposed to a purely mental health disorder.
For more details on Dr. Landis's resignation from the IACC, see here.
Meanwhile, Dr, Francis Collins, head of the NIH, has spoken out on the resignation of Dr. Landis from the IACC, in a video clip posted by the Simons Foundation Autism Research Initiative.
Dr. Collins called autism a "disease" (as opposed to a disorder) that "ravages" children, and conceded that parents have "understandably" been left frustrated and impatient. He also rightly stated that we need to "poke around in every possible way" and not assume that there is just "one path" to solving the riddle that is autism.
But, some parents also wonder, was the NIH Director admonishing them for making Dr. Landis feel it was "necessary" for her to resign from the IACC? Was Collins also demanding that parents "step back" from pressuring federal offcials to find the cause of their children's disease?
It is not possible to tell from his rather vague comments. I will ask for a follow up interview to elicit more context for his remarks, which were as follows:
Clearly the area of autism is one where great passions have come to bear, and you can understand that. Parents who have kids with this disease, who have seen every day the ravages that this has brought down upon the heads of their child and on themselves, are impatient, and understandably so. Frustrated, and understandably so. And different perspectives about what is the right direction to take have certainly bubbled up at the IACC at times, in a rather tense way.
The recent experience where Dr Landis found it necessary to resign from the IACC is just one example of the level of tension and lack of trust that seems to have appeared in that environment. My hope would be that this experience might cause people to step back a little bit from the intense battles that seem to be going on and say, "Wait a minute, what can we really do here that is the right thing to do to get the answers?" That's what we all want. I know that is what everybody wants. We don't know what the answers are right now. And so it's critical to poke around in every possible way that might give those answers, and not assume that there's just one path that's going to get to the truth.
Time will tell if Collins is able to resolve all the "tension" and "lack of trust" at the IACC, but he has his work cut out for him.
"This is disingenuous condescension on the part of Collins. Step back? Who manipulated the agenda, both procedurally and substantively, to make sure vaccine research would not happen?" Robert Krakow, an attorney and the father of a child with regressive autism told me.
"Step back?" Krakow continued. "After years of inaction? My reaction to Collins is that we should step up, not back, and intensify our advocacy, not temper it. His words are too little, too late for us to put our trust in the NIH. They have had their chance. They have lost our trust. Now someone at NIH needs to step up to do the right thing. That burden should not be on beleaguered parents who are seeking answers from the 'experts.'"
And Sallie Bernard, an autism parent with the Coalition for SAFE MINDS, attributed parental impatience and frustration to "15 years of NIH autism plans and millions spent with only modest, incremental advances. We are at 1 in 100 children and NIH can't explain why. Instead of asking parents to 'step back,' he should acknowledge the failures in NIH leadership, such as telling Congress that no extra money is needed for autism research. Dr. Collins could send a welcome signal to parents that NIH will do the right thing by finally holding its autism team accountable for real progress."
On the other hand, Dr. Collins may end up being more in agreement with these parents than other leading medical figures in the country, who still insist - despite mountains of evidence to the contrary - that the answers to autism's mysteries lie almost exclusively in the human genome.
On Sunday, Dr. Collins gave a speech at the Society for Neuroscience meeting in Chicago, and, if you were to judge solely by the article written by Virginia Hughes on the website of the Simons Foundation, you would surmise that his autism research focus is almost exclusively centered around genetics.
"Collins was head of the National Human Genome Research Institute for 15 years, and led the high-profile Human Genome Project, so he is no stranger to the limelight," Hughes fairly gushed. "But as head of the NIH, in charge of a $31 billion annual budget, he is a powerful man with big ambitions."
During his speech in Chicago, Collins spent a good deal of time talking about autism, "a disease of great public concern and great scientific puzzlement," as he put it. And, as Hughes wrote, "He said that high-throughput technology has already identified more than 50 (genetic) variations, both rare and common, linked to autism spectrum disorders. He added that $30 million dollars of funds from the American Recovery and Reinvestment Act will be used for full sequencing of target genes and, for a few individuals with the disorder, whole-genome sequencing."
But Hughes did not write about Dr. Collins's dedication to studying environmental factors in autism as well. In another video clip of his interview with the Simons Foundation, the NIH Chief had this to say:
There have been some insights, in some cases of children, of environmental or genetic contributions, but more still remain unexplained. But, in part due to the Recovery Act, NIH is beefing up its autism research to a considerable extent in several areas. One is to look at environmental factors that might play a role that haven't been discovered. Another area is to study the interventions that have been proposed to see which ones work best for children with autism. And a third is to try to understand what the genetic influences might be.... But it may be that autism at the DNA level is not one disease, but it may be 100 or 1,000 different diseases, all of which have in common this effect on the brain.
This wasn't the first time that Dr. Collins has recognized that autism "must" have environmental as well as genetic influences. Back in 2006, while testifying before the House and Senate Subcommittees on Labor-HHS-Education Appropriations, he said the following:
Genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons. Therefore, GEI (NIH's Genes and Environment Initiative) will also invest in innovative new technologies/sensors to measure environmental toxins, dietary intake and physical activity, and using new tools of genomics, proteomics, and understanding metabolism rates to determine an individual's biological response to those influences.
Dr. Collins is on the record: 1) He recognizes that at least some autism cases have been associated with environmental influences, 2) He wants to study all potential environmental factors in autism, including toxins, and 3) He wants to study "proposed interventions" that can actually help those with autism -- which he called a "disease" -- get better.
It is not clear exactly to whom Dr. Collins was speaking when he said to "step back" from the tensions at the Interagency Autism Coordinating Committee. But I do hope he will "step up" to convince scientists that the search for answers to autism's "mysteries" is to be conducted as much in our modern environment than in our DNA.
This post originally appeared on the Age of Autism site.