The following is my videotaped public comment in front of Interagency Autism Coordinating Committee (IACC), drastically cut down due to a time limit given to me the day before the meeting. Shortly before I testified, IACC Chair Tom Insel asked me to be “respectful” of committee members, saying he read my original submission. “I know you don’t like some of the committee members,” he told me. I asked him multiple times to clarify. He just kept repeating to me to be respectful until he finally replied, “I don’t think I am getting through, here.” So I asked for some examples of disrespectful comments, and he responded, “physical threats.” I was completely floored by his example. I replied that my written testimony did not contain any physical threats and that the final version in my pocket is just scaled down. When I asked him for some examples of disrespectful comments in what I had written, he dodged with, “I don’t know, because I’ve only read your comments submitted to the committee, not the comments in your pocket.” I could tell he was not looking forward to what I had to say.
When the meeting ended, no public comments had been discussed even though a half hour had been set-aside for committee members to respond. Many of us sat there all day, hoping the comments would be discussed, but they weren’t. I was, however, curious what Dr. Insel thought of them.
When I asked Dr. Insel if my commentary was respectful enough, he replied, “I wouldn’t lose sleep over it.” I found it interesting that he was asking me to be respectful given his poor track record of respect for the autism community. So I brought up the story of him getting on an elevator with a woman and her son with autism. I relayed to him that when her son started to stim, Dr. Insel hit the “open door” button and stepped off, saying, “ I'm not riding up with them.”
When he heard this, Dr. Insel made an exaggerated goofy face and claimed he could not remember. “I’ve gotten on a lot of elevators with people,” he told me. I said, “It was a story that ran on Age of Autism.” He replied, “There are a lot of stories going around.”
“Well, I just wanted to get your side of the story. You don’t strike me as someone who reads blogs,” I responded.
“I don’t,” he replied, “but I think you need to work on getting your facts right; I remember this one article by Dan and Mark on Age of Autism titled ‘When Vaccine Development Is Family Business: Tom Insel’s Conflicted Role on Vaccines and Autism,’ talking about my brother’s role in developing a vaccine. That was all the way back in 1978. How is that a conflict?”
I replied that vaccines, particularly thimerosal, are suspected of causing autism and that the vaccine his brother helped develop contained thimerosal. The IACC chair replied with the same goofy look, “I don’t even know if it contained thimerosal. His involvement was all the way back in 1978, before you were born.”
I replied, “It does not matter when it was made, it’s still a routinely given vaccine. HibTITER made by Wyeth, right?”
He denied even knowing the brand name. “My brother is not involved in that anymore, he heads a group devoted to fighting juvenile diabetes.” The Hib vaccine is also suspected of causing juvenile diabetes.
Dr. Insel then brought up Mark Blaxill’s testimony. “If there is anybody’s public comment to emulate, it would be Mark’s. He did not attack anybody in particular; he just made his point about how the committee was not doing a good job. I respect Mark, I don’t agree with him, but I respect him.”
Bringing up Dr. Insel's brother, I told him, “You know, you say your brother’s involvement in vaccine developing is not a conflict of interest, but a conflict of interest is still a conflict even if the person possessing that conflict does not perceive it as such. You must know that. Arguably, one can say that since you don’t perceive your brother’s connection as a conflict, that you will be less vigilant in making sure it does not alter your decision making.”
As I was telling him this, I saw a huge grin forming on his face. “So then couldn’t you have some subconscious bias that could influence you?”
I replied, “Of course, we are all human! We all have biases!” Unlike him, however, I am not related to anyone who took part in creating a disputed cause of the autism epidemic while chairing a federal advisory committee officially charged with “combating” autism.
He replied, “Well then, I think we just found something we agree on!” Of course, agreeing on something that obvious was hardly an epiphany. What he really seemed happy about was ending our conversation, but we parted ways cordially.
“It was good meeting you,” he told me. “It was good meeting you, too,” I said.
I will continue to denounce both the IACC at large as well as the specific committee members who deserve criticism the most. If Dr. Thomas Insel sees that as not being “respectful,” then so be it.
Jake Crosby has Asperger Syndrome and is a contributing editor to Age of Autism. Jake is a 2011 graduate of Brandeis University with a BA in both History and Health: Science, Society and Policy. He currently attends The George Washington University School of Public Health and Health Services where he is studying for an MPH in epidemiology.