03/28/2008 01:49 am ET Updated Nov 17, 2011

The Tilt-a-Whirl World of Autism

My friend David Kirby is reporting at Huffington Post that certain heads are emerging from the sand in an effort to look at vaccine safety. The recent legal case where Miss Hannah Poling's family was awarded damages for her vaccinations having triggered (exacerbated / caused / choose your word) her autism may have sped up the process David himself started three years ago with his book, Evidence of Harm.

Many medical professionals (and reporters) have tried to soften the blow of a nationally publicized link between autism and vaccinations by downgrading Miss Poling's condition to autism-like symptoms. "Oh, Mommies and Daddies, don't worry! It isn't real autism, just autism-like symptoms." As if her condition is the medical equivalent of pleather. That dismissal of Miss Poling's diagnosis enraged many in the autism world. But it didn't anger me as much as it reminded me of something.

It brought me back to an examination room at a nationally acclaimed medical center in a state that's "high in the middle and round on both sides." You see, my husband Mark and I were once told, "I'm not sure this is really autism," about our girls' diagnosis by a brilliant and kind-hearted doctor who is an expert in the field of Neurometabolic Genetics. He confirmed through testing that our kids have measureable differences in their metabolic makeup. He referred to it as possible Mitochondrial Disorder.

An autism diagnosis, with its outdated behavioral/psychiatric code, knocks our kids so far out of the medical realm that they lose many of their rights to proper investigative medical care. Every behavior is attributed to "their autism" and virtually dismissed. Even "behaviors" like seizures.

When my daughter Mia was younger, she developed a seizure disorder. The pediatric neurologists' response to me when I begged them for answers as to why she was having Grand Mal (which means big bad in French and is a spot on description) seizures was: "She has autism. She's wired differently." I remember standing in her hospital room thinking, "You went to medical school to give me that bull$#*t answer?" I did some homework on my own (don't we all?) and wrote a letter to my neurologist with many questions and suggestions including this one:

Why didn't Mia have a CT and then spinal tap and the MRI during her stay? Because her fever was low to normal? What blood tests were done and with what results? A family friend is a neurologist at UCLA medical center. He recommended the following tests because of her PDD diagnosis and that 6 is at the end of the spectrum for febrile seizures (as you told me): Metabolic screening including Amino Acids, organic acids, lactate, pyruvate and basic lab work.

This doctor, an MD, PhD ( like Hannah Poling's father) told me flat out: "We're not that aggressive with autism." Well guess what's different in my Mia? Lactate and pyruvate (among other organic acid thingamajigs), per the tests we were able to secure years later through the Neurometabolic Geneticist. Had we known this at the outset of her battle with the Grand Mal ogre, could we have averted four long years of intractable seizures that didn't respond to anti-seizure medications by the simple act of running tests that a child without an autism diagnosis would have gotten as a matter of course?

Parents are scared. And doctors haven't provided answers that Moms and Dads can trust. I got a call this week from a young Mom whose instinct was telling her to hold off her 19 month old son's slate of vaccinations. He'd been on antibiotics throughout the winter, had eczema, and recently showed signs of food allergies. She was fearful of confronting her pediatrician with a request to delay the vaccines and/or break them up. She was afraid the doctor would bully her into giving her son the shots. But a mother's instinct is usually right. You just know.

Like the time I foolishly loaded three year old Gianna and four year old Mia onto the Octopus ride at an amusement park. They loved the Scrambler, why not the Octopus which spins and goes up and down? An autism dream come true! My girls trusted me, even as we lurched up to the top of the ride while others loaded below us. I knew in three seconds I'd made a mistake. I couldn't hold onto them properly as the car spun, and screamed down to the ride operator, "We can't ride! Let us off!" And he listened to me. We got off the ride and walked away safely. If only our medical professionals were as attentive to us.