I sat in the ballroom scrolling through my phone. It was at least another twenty minutes before the keynote, but I was afraid if I got up, I wouldn’t get a good seat. Instead, I kept my butt planted where it was and re-read my notes from Dr. Martha Herbert’s presentation on the brain. I then picked up my phone.
“Autism is not a tragedy,” Dr. Herbert stated emphatically. “It’s a catastrophe.”
She emphasized “catastrophe” and repeated herself a few times. This was in response to an audience member’s question about ADHD and learning disabilities and all of the other things plaguing our children.
Her words struck me deeply. I clicked on my Facebook application and put them as my status. Here was a pediatric neurologist from Harvard telling us what we’ve done is catastrophic, and yet, some outspoken critics would have you believe everything is just fine. It was one of many head shaking moments over the weekend.
Not long after, I thought I saw someone staring at me. I was right.
“Are you Julie?” asked this bubbly, smiley, very pretty woman. She seemed a little embarrassed and then introduced herself.
“I swear I’m not a Facebook stalker!” She apologized. “I just recognized you from your picture and wanted to say hello!”
We greeted one another and she moved closer so we could catch up. Facebook, we agreed has created this new phenomena where you can really get to know someone virtually…all about their family, their life, their jobs…but pass them right up in the hallway. I’m sure I walked right by a number of people I correspond with daily.
For several minutes we talked about our kids. How old is your child? How is he/she doing? What have you tried? What doctor are you seeing? Is anything working? It’s the standard “get-to-know-you” conversation in the biomed world.
When Jenny came out, we finished our chat and she moved back to her seat. We hoped to see each other again and went about our day.
Sometime that night I saw a nasty article already on the Internet about Autism One. To start the conference, there was one slamming it and The Chicago Sun Times. Now to end it, there was one slamming it and the parents who attend.
A blogger, who hadn’t attended the conference, but instead was regurgitating another blogger (who hadn’t attended the conference either), wrote an entire article about the inability to “bleach” the Autism out of a child. She was referring to MMS, a treatment being used for gut problems in some children that hadn’t even been presented yet. It was on schedule for the next morning.
It struck me as really odd that something most people at the conference didn’t even know much about had already been completely scrutinized by people who seem loathe the mere idea of medically treating a child with Autism (with anything but pharmaceuticals, apparently). It seemed obsessive and premature, to say the least, and it was eerily reminiscent of what happened with other interventions in the past.
But mostly, the article irritated me for its tone. The author’s message was clear: parents who try these treatments are gullible, dangerous, and/or don’t love their children, and the people who pass them off are snake oil salesmen.
Things like this used to make me really angry. It’s so damn insulting. I would craft long, thoughtful responses only to end up in a comment war with some coward who won’t even use his/her own name. I don’t have the time or patience for that non-sense anymore, nor do I feel the desire to defend myself anymore. My child is recovered. The results speak for themselves.
Still, it bothers me that these kinds of articles get out there and discourage other parents from trying to help their child. Anti-biomed folks always seem to forget that no one is claiming to have the cure for Autism. We simply know it’s a medical problem, not a mental one, and from there, are trying to piece together protocols that could help. (Protocols that primarily and overwhelmingly revolve around using an MD, vitamins, supplements, oxygen, antioxidants, healthy food, antifungals, and digestive enzymes.)
Some things work; some don’t. But for the very community that spent decades telling the world Autism was the result of unloving mothers (and has never apologized for that either); that still hasn’t developed a simple standard of care for Autism; and that still can’t decide if it’s an epidemic or not, let alone how to properly define or diagnose it…I’d say they have a lot of nerve criticizing anyone.
Anyway, I tried not to let the blogger get to me, but admittedly, a number of times I found myself gritting my teeth thinking about how stupid she makes us sound. I wondered if she has the same disdain for chemotherapy or radiation, or say, injecting neurotoxins into children, as she does for over-the-counter chelators developed sixty years ago precisely for heavy metal poisoning in children? Does she harbor the same concern for psychotropic medications that cause boys to grow breasts as she does for a sauna?
I also wondered if she considered Dr. Martha Herbert, MD a snake oil saleswoman. (You know, that pediatric neurologist and author from Harvard who presented on the brains of children with Autism?) Is she full of baloney?
And what about Dr. David Lewis, Ph.D., whistle-blower extraordinaire, who discussed the fate of honest researchers who rock the boat? Is he full of it?
And when Dr. Jerry Kartzinel, MD, author, father of an affected child, and frequent television guest with Jenny McCarthy, was kind enough to talk to me for twenty minutes about how to address IQ loss in our children, was he just yanking my chain?
And when Luc Montagnier, NOBEL LAUREATE, presented on microbes in the guts of our children, was he just there for the fun of it? Did he just pull a fast one on us?
Of course, not.
The fact is Autism One is loaded with good people, good parents, and great doctors who are willing to suffer personal attacks in order to make progress in the medical treatment of our very sick kids. With almost no money from our government and very little from private funding they have made more of a dent than everyone else combined. To add insult to injury, they then get harassed for it.
Frankly, I don’t know what the blogger’s problem is, but to make that sound evil…to frame it as some sort of unwillingness to accept my child…to disingenuously portray what is we’re doing and why…is for me, reprehensible.
On Sunday, my husband and I made sure to get up and out the door early enough to hear all about MMS. It was not something I had really thought about trying until that article intrigued me. We found our seats and sipped our coffee while we waited.
Sure enough, two rows in front of me just like the day before sat my new Facebook friend. We laughed at the coincidence and once again caught up on our children and the things we had learned over the last twenty-four hours. It was then I asked her what she did for a living.
“Oh, I’m a doctor,” she laughed at the unspoken understanding of why that was funny.
“You’re a doctor?” I responded surprised. “An MD?” I clarified.
“Yes, an MD,” she nodded.
“That’s awesome!” I said cheerily. “Do you mind me asking how you ended up here? Or how your colleagues feel about what you’re doing?” I could talk to her all day about this. I’m fascinated at the doctor-parent perspective.
“Well, I have to tell you, it isn’t easy,” she sighed. “Most of them roll their eyes at me.”
“And how about for you personally?” I pressed on. “I can’t imagine coming to terms with any of this is easy. I always think about how this must be for doctors. I really can’t imagine how it would feel.”
“Thank you for saying that,” she replied genuinely. “It’s really hard sometimes to be a parent and a doctor in all of this. Reading Facebook posts and blogs can be rough. We’re not bad people. We’re not evil. We just don’t know. We’re not trained to treat these kids. We’re not taught this.”
She continued, “I remember crying calling my husband last year telling him I felt so schizophrenic. Everything I was learning happened to my child went against my training in medical school. It was traumatic.”
“I would imagine so,” I tried to sympathize. “How did you rectify that then? I mean, how did you finally decide to choose this path?”
“Oh, I saw what the MMR did to my child,” she stated very matter of fact, almost like I had asked her a trick question. “The only thing I had to choose was how I was going to fix it.”
And so she came to Autism One to learn.
Julie Obradovic is a Contributing Editor to Age of Autism.