Wednesday, June 29, 2005


Autism Brings People Together

Many of you know about my obsession/hobby of collecting View-Master reels. I recently met through a mutual friend, a woman in the Netherlands, Bernadette, who not only collects View-Masters but also has a son who's autistic. Her son Coen is now 21 and lives in a care facility. He also has Tourette's Syndrome which is fairly common; or at least it's common that ASD is accompanied by some other behavioral/biological difficulty. My editor at the Marin IJ has a friend, Rick (who I've also met), whose son has Asperger's Syndrome (one of the disorders on the autism spectrum) along with Tourette's. Rick and his son live near Sacramento and things have been difficult for them.

I bring this up not only to introduce you to people we've met and have become important to us as we struggle with Porter's ASD, but also to highlight the fact that autism is everywhere these days. Ten, fifteen years ago it was something you rarely, if ever, heard about or you associated it only with Dustin Hoffman's character in Rain Man. Today virtually everyone I know or come in contact with knows or is related to at least one person who's autistic. Many of you, upon finding out about Porter last year commented to me that you knew someone else similarly afflicted. When I was a kid, a teen, even a young adult I knew not one person who was autistic. Not one. Yet a large portion of the medical community continues to pretend that this is not an epidemic. I was just forwarded yet another story in a medical journal "proving" that there is no epidemic and that it's simply that doctors are better at diagnosing autism now than they used to be. I find it infuriating that people who have been entrusted with the care of my child and your child appear to care more about saving their own skins, reputations, etc. than owning up to what's happening to an entire generation of children.

Robert F. Kennedy Jr. has an article in Rolling Stone and that talks about the mounting evidence for the mercury-autism link (much of it is the same info that’s in David Kirby’s “Evidence of Harm”). ABC News (who gets a lot of advertising revenue from pharmaceutical companies) just last week pulled two interview/news pieces with RFK jr. and then after an outcry ran watered down versions of them with “experts” debunking him with no supporting evidence and without allowing any rebuttal. This is going to be a long battle before the medical community owns up to their monumental mistake. This will be considered the worst health blunder in American history and we’re currently exporting it to the rest of the world. Millions of thimerosal (it's the mercury, stupid) laden shots have been sent around the globe as part of the UN & US’s foreign goodwill vaccine program. China, to take one example, had virtually no reported cases of autism until a few years after we started sending them vaccines. Today there are over 1.8 million autistic children in China.

This new study released today, published by Blackwell Publishing, would likely explain that away by saying that suddenly doctors in China figured out what autism is and that’s the reason that going from zero to 1.8 million is not an epidemic. Their study, and the many before it that have said essentially the same thing, have been effectively refuted time and time again by the simplest of logic. If there is no epidemic and the number of cases is not going up but we are simply diagnosing the existent cases better, then where are all the adult autistic children who were not diagnosed when the diagnostic standards were, well sub-standard? By their logic, there should be thousands or even millions of undiagnosed autistic older children and young and even middle-age adults all over the place. Where are they? Every 150 people you meet should be autistic if the numbers have not gone up. Every football or baseball game you attend should have literally hundreds of autistic people watching alongside you. Have you seen them? I haven’t, because they’re not there. This is the medical community trying to reassure an increasingly worried public and pretend nothing is wrong.

I know I sound like a conspriacy nut, and many of you know I am often open to accepting a view different from the status quo. So I would encourage you to read Kennedy's article or, even better, spend the time to read Evidence of Harm. It's a fascinating portrait of what happens when the best of intentions go horribly wrong and those who caused it are either unwilling to or incapable of owning up to it. Read them and then make your own mind.

Anyway, back to the reason for this post. Sarah and I have met some wonderful people over the last year who are all struggling with a son or daughter with ASD (though it affects boys 4-1 over girls). Most have been warm, compassionate souls and the bond created between parents of autistic children remind me of some of my closest friends where a bond was created out of a difficult, shared experience (like Army buddies, bad jobs, and the like). And although I wish there was a way to undo the harm done to Porter so that I could wake up and he'd be exactly the same as other kids his age, I wouldn't want to change what a delightful, happy person he's become. Though there are challenges and setbacks, every day also brings new joys. It's hard to express how fortunate I feel to be able to be here for him and Alice every day. And I especially wouldn't want to change how it's matured me (stop laughing), strengthened my marriage and created so many close friendships.

My friend Bernie's son Coen when he graduated from high school, talking to his favorite musician, who called to congratulate him.

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