On the weekend of January 30 I went to my first autism conference in San Francisco. It was called "Autism: Hope in Action" and put on by Martin and Julie Matthews.
It may seem unusual that I'm such an active voice on-line and yet have met hardly any of our community in person. What can I say? My home life is tough, but this was in my area. There was no reason not to go.
I expected to find a range of people, from the lost, the struggling, the brilliant, and the eccentric. I wasn't disappointed.
As I sat with more than 150 people in the hotel ballroom listening to speakers talk about dietary changes, the struggles we parents, especially men face, I thought, well, this is a good start.
I spent about a half hour with one of the organizers outside the ballroom discussing the vaccine/autism question. The general idea the organizers had was to fully document all of the medical research on the positive effects of diet while skirting the vaccine question. I understood the thinking, even if I disagreed with it. I tried my best to explain from my veteran perspective that what we're saying isn't new to the medical establishment. Those at the very top, as explained so well by former NIH chief Bernadine Healy, have made a conscious decision not to investigate these claims "for fear of what they might find."
The vaccine/autism question isn't a discussion with the medical community, I tried to explain to him. We're at war. They have abandoned our children. We're the only ones to fight for them. I even had a number of bumper stickers printed up (based on J.B. Handley's wonderful article of a few weeks ago) which read "VACCINES DON'T CAUSE AUTISM. PEDIATRICIANS DO." I was thinking about offering them to the organizers but after looking at the crowd I realized they weren't warriors. They were a bunch of injured lambs, trying to figure out how to fix their children. Maybe that anger needs to sit for a few more years.
The panel discussion with three local doctors was pretty standard for anybody who reads Age of Autism on a regular basis, but I asked a question which provoked a good deal of discussion. For the past few months I've been researching a question for which I still don't have a clear answer.
The question is this: is autism the result of capillary inflammation, resulting in lowered oxygen supply throughout the body giving us all sorts of unusual effects such as metal retention, increased viral and bacterial infections, production of abnormal fats, and lowered mitochondrial energy production? The idea I'd run across is that insults to the body might trigger an inflammatory switch on the inside lining (endothelium) of the capillaries (the greatest number being located in the brain and digestive system) and barring some intervention to flip the switch the other way, you get autism which seems resistant to any interventions.
The doctor told me he thought I was on the right track, although he then gave me information on medications which either block glutamate from attaching to the receptors, or increase the production of GABA. And of course he wouldn't agree to just a half hour consult with me on the phone, but wanted a mountain of forms filled out, along with a check for $450 for a one hour consult.
I told the office manager that I pick up things pretty quick and really didn't need an hour. Personally, I think all I need is about 15 minutes to let me know if the guy has anything worth investigating.
As the session was winding down a man saw my name tag and became very excited. He told me he was a big fan of my work and had even linked a few of my articles to his blog. (Insert your own mental image of Kent puffing up with pride.) "You're one of the heroes of the autism fight!" he gushed with great enthusiasm.
And then he called me a caveman.
Okay, it didn't go exactly like that. Here's how it actually went.
As we talked I mentioned one of the things which always amazed me is how many men seem to mentally check out when something goes wrong with their children. That wasn't my experience at all. My wife freely admits I'm the warrior among us. "Maybe it's just that my mother was full-blooded Sicilian" I mentioned to my number 1 fan. "But when your family's in trouble you fight. Fight to the last breath. I don't understand any other way of thinking."
A sudden look of excited discovery swept his face and he replied, "It's not your Sicilian background that made you that way! It's the Neanderthal!"
He went on to explain his theory of how islands were the last refuge of Neanderthals and the subsequent interbreeding led to people who were more clannish and violent. He spoke of the small, robust stature of island people, their hairiness, and even the slightly different shape of their skull. He recounted the various genetic clues in the genome of island people as residue of the Neanderthal, like the high rate of MS and cystic fibrosis in certain populations before concluding, "And if you look at how the mafia acts you clearly see evidence of Neanderthal thinking."
And so I stand revealed before my gentle homo sapien readers in all my prehistoric Neanderthal glory! At first I was a little offended but I quickly started to ponder the association more deeply. I often feel like a lone warrior in wanting to go Neanderthal on the pharmaceutical companies and medical authorities who act as if our children don't exist.
If I am a throwback I take pride in my heritage. My ancestors braved the ice age, killed woolly mammoths, and as their lands dwindled, I'll bet the Cro-Magnon women snuck off to bear children with them because there's nothing sexier than a man who will fight for his family. They wanted their children to be warriors, not cowards. (I can just hear the conversation around the prehistoric campfire. Turok, how is it that your children all have dark, curly hair when both you and your wife have blonde, straight hair? Turok shrugs, "Who understands the gods?" he replies. His wife turns away to tend the fire, a slight smile on her face.)
Don't you want to be a Neanderthal, too?
Kent Heckenlively is Contributing Editor of Age of Autism (When he's not fighting off saber-tooth cats!)