Listen to Autism Hearings

This is several hours long but was one of the most important and dramatic events I've ever experienced. I was able to get into the courtroom after I participated in the press conference -- Congressman Burton brought me in through his office. I cannot begin to express how critical I think this is. Please listen to it.

The debate between the works of Brent Taylor and Andrew Wakefield was remarkable -- Andy simply said, "I have found something," and Taylor replied with "I have proven that you cannot possibly have found something." O'Leary stated "I have confirmed that Dr. Wakefield has found something." Offit responded with, "he cannot have found something that suggests a link between autism and vaccines, because of the possible consequences of such a finding."

There was a shining moment where I could have jumped up and kissed Congressman Burton. He said, "Dr. Wakefield, would you be willing to release your methodology and data to an independent panel of researchers?"

"Yes, of course."

"Prof. O'Leary, would you be willing to release your methodology and data to an independent panel of researchers?"

"Without hesitation."

"Dr. Singh, would you be willing to release your methodology and data to an independent panel of researchers?"

"Absolutely."

"Dr. Taylor, would you be willing to release your methodology and data to an independent panel of researchers?"

"Uhhhhhhh, I'd have to check with my superiors."

The following day many of us parents went to the NIH for what we thought was going to be a meeting. Unfortunately, their agenda was, "sit quietly while we tell you all about autism, and afterward, you will be permitted to ask questions." Dr. Marie Bristol-Power spoke first, with a sort of overview of autism research. She explained that a 20-year longitudinal study was our best bet for collecting data on normal brains, looking at environmental factors, etc. Barbara Loe Fisher (NVIC) pointed out that it would be difficult to find "normal" brains if all of the subjects in their study were vaccinated.

Rick Rollens stood up and pointed out that there was revolutionary research to be done, and urged cooperation between the NIH and the MIND Institute. I stood up and explained that many of us parents and researchers had great ideas for studies, such as controlled studies looking at immune panels, food allergies, nutritional deficiencies, gastrointestinal problems, etc. and urged them to start looking into such areas instead of the traditional brain and genetics stuff. Dr. Michael Goldberg, from California, talked about his work and also emphasized how important it is to explore these areas.

The moderator was looking a bit aggravated. He requested that we please refrain from speaking until the end of the meeting. The problem was, the meeting was from 10-12, and they had five speakers. It was already almost 11am. In other words, the meeting was just long enough for them to say their piece.

Things got worse from there. The second presentation was on the potential of brain imaging to determine what is different about autistic brains. Dr. Foote spoke to us as if we were in kindergarten, saying, "we have sophisticated technology for looking at the brain ... it's called M. R. I." We were hopping mad.

The third presentation was from a Dr. Hirtz, and it went something like, "What is autism? Autism is a rare disorder seen in 12 out of every 10,000 people. It is believed to be genetic and neurological." She went on with "Autism 101" for a few minutes and I was writhing in my seat. Rick Rollens was patting my hand and whispering "Down, girl."

Finally, in the middle of it all, Dr. Goldberg interrupted -- he jumped up and asked, "Why are you wasting our time with 20-year-old information? You people need to have a major paradigm shift in your perception of autism. These kids are not behaviorally challenged, they are physically ill! Until you recognize this, you are going to waste another 20 years looking at the wrong issues." Hirtz looked like she had never been interrupted in her entire career, and stood there gaping.

He continued: "We are looking at a terrible, tragic epidemic that will sacrifice an entire generation of children unless you can do something remarkable. You need to listen to our findings as parents and pediatricians. We already know that autism in immunological -- why don't you know this already? We already have studies looking at treatment through correcting the immune dysfunction -- why aren't you interested in these studies?"

He went on for a couple of minutes and then the moderator interrupted and said, "This is how this meeting is going to go: We will finish our presentations, and you will be allowed to ask questions afterward."

Well, this was it for me. I leaped up and screamed, "How dare you patronize us with this kind of information? We are not stupid -- we are educated, informed parents who have done thousands of hours of research in autism. We did not come here to be lectured to, we came to be listened to. We are full of ideas that you must hear. We know what happened to our children -- how can you think you will be able to tell us otherwise?"

Then I turned to the audience and said, "My child had chronic ear infections and allergies but developed typically. After his MMR vaccine, he had seizures and a high fever, and within three weeks lost all social and language skills, and developed chronic gastrointestinal problems. To how many people does this sound familiar?" Every hand in the audience went up.

The moderator said, "Fine, I guess we'll just fast-forward through our presentations and let you people do all the talking." He started flipping through the slides. Unfortunately for him, the next presentation was from a guy from NIH Infectious Diseases, and the slides said things like, "Why Vaccines Are Safe And Effective." I really started hollering then.

"Look at that nonsense! Did you actually think you were going to convince us that we don't have a problem? Listen to me: We Are No Longer Susceptible To Your Propaganda."

Then Dr. Goldberg said something else. Then the guy said,"well, you didn't even let us finish." I pointed out that the meeting was more than half over, and that if they were going to continue wasting our time, I was leaving to go have lunch and would anyone like to join me?

People started to get up, but Barbara Fisher, bless her, said, "Hang on a minute. You go on and finish, but we would like a chance to speak when you're done."

The moderator turned off the projector and said, "Okay, here's what we'll do. We have the room until 1pm. Why don't we finish up, and then you people can line up and say what you want."

After that, Dr. Bristol-Power stood up and gave a rather subdued talk on how it might be possible to look at some of these issues. Her language had changed. She referred to autism as an epidemic at least four times, and referred several times to the immune issues (not the "possible" immune issues).

Then lots of parents came up and said what they wanted. The speakers didn't say another word. Rick urged them to consider holding more meetings like this. Hirtz was glaring at him with an "over my dead body" expression on her face.

Afterward, I went up to Marie B-P and shook her hand and thanked her. I told her that I believed she was the only person on that stage who was actually listening to us. She had the strangest expression on her face. I looked into her eyes and I thought, oh god, she believes us. She believes us and she can't say anything. I hope I'm right, but I don't know what good it'll do. There are two books out called "The Medical Mafia" and "Racketeering in Medicine" -- I think I'm going to have to read them.

I am also ordering a little book from Amazon called "How the Immune System Works." Maybe I'll send a copy to Paul Offit...

The rally was a huge success. Shelley & Aidan Reynolds, and Jeana & Darryl Smith are my new heroes. That evening, I also discovered that they know how to get down and boogie.

For everyone who missed this DC events, I urge you to stay in the loop and show up when the next round of hearings are scheduled. Remember, Right should make Might, but large numbers are helpful too.

I guess I'm going to have to write another book.

-Karyn