After sitting through two very boring presentations at this year’s Autism One conference, it was apparent to my colleague and I that writing about the annual anti-vaccine trade fair would be a challenge bordering on pointlessness. What could we say that hasn’t been said before?
An hour later we were standing in the lobby of the Westin Lombard, surrounded by four policeman, three hotel security guards, and a growing crowd of curious parents. And then were kicked out, for no serious reason. For me, it was deja vu all over again.
We arrived in Lombard, a Chicago suburb of 42,000, at 10 am, after a 30 minute drive from Hyde Park. That’s where my friend and colleague, Jamie Bernstein lives. She’s a graduate student at the University of Chicago and VP of Women Thinking Free, and blogs at Hug Me I’m Vaccinated. This was Jamie’s first AutOne conference, and she wasn’t sure what to expect.
We walked down narrow hallways packed with exhibitor tables before heading to the Grand Ballroom for the disgraced UK gastroenterologist Andrew Wakefield’s 10 am talk on Münchausen Syndrome by Proxy. When he walked to the podium, the magical sparks from his boyish grin, amplified by two giant flat screens, convinced 1,000 grateful parents to leap to their feet and applaud the man whose fraudulent 1998 Lancet article resuscitated the modern anti-vaccine movement. Wakers, as he is known, spent the next hour sharing the sad tale of corrupt doctors, clueless social workers, and the brave parents of five autistic children in a case Wakefield calls “The Arizona 5.” The story first surfaced last fall, when Wakefield promised a giant December rally to focus the nation’s attention on the anti-vaccine movement’s “Rosa Park’s moment.” The rally fizzled, Rosa’s bus route stopped short of Crazy Town, and the Arizona 5 slipped down the memory hole.
While Wakefield spoke, the efficient and polite Westin staff set up folding tables with white linen and gleaming metal trays of chicken strips and pizza, with a frozen dessert treat, coconut milk and a fruity energy drink in a solid metal container that could safely store nuclear waste. The chicken strips had a faint, chemical aftertaste that reminded me of novocaine, and my fudgesicle tasted like wheat germ. But the coconut milk, served in a juicebox, was delicious. So far, lunch was the big story. I started to look at my watch.
Jenny hit her mark at 11:45, all curls and smiles. She told a touching story about Evan’s love of escalators, and long hours spent at the local mall, just your average single mom and her special needs child. Then she introduced her friend and spiritual guru Katie Byron, a silver-hair matron with a penchant for long pauses and thousand-yard stares which she used to great effect as she plumbed our deepest fears. She started by walking her audience through a questionnaire that read like a Mad Lib for the terminally melancholy. Examples: I am ______ with _______ because _____________ . I want _____ to _________ . She invited audience members to read their Mad Libs aloud while McCarthy held a mic, Phil Donohue style, which made me think Byron was auditioning for her own Oprah Network talk show. My suspicion was soon confirmed when Byron invited an audience member to sit with her on a generic talk show set – two comfortable chairs facing one another, every word streamed live on the internet. For two mind-numbing hours. This was McCarthy’s keynote address: a visit with her shrink, who isn’t a doctor but wants to play one on TV. The grand ballroom was emptying fast. When the session had mercifully ended, half the seats were vacated.
McCarthy made one more appearance to thank everyone for coming, and to introduce a familiar 20-minute video which homologously recombined into the movement’s tinikered DNA about three conferences ago. Jenny on Oprah, Jenny on Dr. Oz, Jenny on Good Morning America, Jenny leading her angry mob in another grand ballroom.
We decided it was time for a cup of coffee, and walked to a nearby Starbucks where Jamie and I talked about what we had seen. Jenny made no mention of vaccines, and one parent whose Mad Lib read “I am angry with the pharmaceutical companies because they hurt our children” was talked down from her ledge by Katie Byron. Was this Jenny’s way of distancing herself from the craziness? Did we just witness the first step of McCarthy’s 12-step career recovery process? Jamie was skeptical, but that comes with the territory when you are a Woman Thinking Free. Still, I saw no clear theme to this year’s conference. Just speculation and finger pointing, which I can’t do without paying royalties to Generation Rescue.
We finished our lattes and walked back to the Westin. It was raining, and we probably looked pathetic when we reached the lobby a few minutes later. I felt bored and anxious, more eager to get back home than to revisit the vendor tables. We were on time for a talk on “Cannabis and Autism”, but Jamie and I thought that was just too depressing. If we waited 90 minutes we could catch Mark Blaxill and Dan Olmsted talking about their anti-vaccine book which rocketed to number five million on the Amazon sales charts. Did we want to do that? The thought of killing time in the gauzy, bordello-themed Generation Rescue salon did not appeal to either of us.
As we entered the l0bby I saw two women staring at us with a look of low-grade panic on their faces. I knew right away we had been spotted. Obviously a “be on the lookout” had been issue for two heretics. The women quickly turned and walked to the registration desk, where an animated conversation ensued. The women looked at us, then looked quickly away.
“We been spotted,” I said to Jamie, as we continued to walk toward the exhibit areas at the back of the lobby. We stopped near a hyperbaric oxygen tank display. I wondered if it mattered to anyone that a recent paper co-authored by Wakefield found no benefit from HBO for the symptoms of autism. So little of what I had seen and heard made sense.
Then Jamie took her 35mm SLR digital camera out of her handbag and snapped a picture of an HBO poster. Seconds later the conference organizer, Teri Arranga, walked up to us. She was all business. “There is no photography allowed here,” she said. To prove her point, Teri sent a volunteer to bring back one of the many signs posted throughout the area that said “No video or audio recording allowed.”
Jamie pointed out, politely and correctly, that a 35mm camera which only takes still pictures is not a video or audio recorder. No problem: Arranga had a sign for that too, and sent her volunteer to fetch it. We were soon joined by two hotel security guards, then four uniformed Lombard police officers. The “no still cameras allowed sign” was never produced, but it didn’t matter. After much scurrying about and conferring with persons unseen, a visibly upset Arranga had made her decision – we had to go.
Arranga had an answer for that – the registration rules posted on the AutismOne website, which she read verbatim in a quavering voice. First, Autism One had the right to deny registration to anyone for any reason. I had registered in March, paid my $25 with a credit care, and received confirmation via email. Jaime was also pre-registered, and had a name badge ready at the registration desk that morning. The second part said that the conference organizers could ask someone to leave if their conduct interfered with the other attendees. “How is our conduct interfering,” I asked Arranga. She had no answer.
We were warned that if we returned we’d be charged with trespassing, then were led, Dead Man Walking style, to the front door. On the way out we passed David Geier, accused by the Maryland Board of Physicians of practicing medicine without a license. He was standing behind the ASD Centers table, expressionless. One day the police will come for him, I thought. But not today.