Even after the neurologist maintained that a chromosomal deletion was insignificant, he recommended we talk to the genetic department to get more information on the findings. We waited months with sleepless nights to get in to see him, finally we were there.
The intake personnel asked why we thought we were there to see the geneticist, "Our daughter is diagnosed with autism and the blood work showed a chromosomal deletion, dad has the same deletion, mom has a different one, and the neurologist thought we could learn more about this from the geneticist."
Without hesitation he replied, "You will learn that these deletions are insignificant and not related to the autism. And, although, we know that autism is a biological disorder not an environmental one, we do not see any evidence of genetic causation in your daughter’s case."
My mind started mulling over these words…
‘Biological disorder’….
‘Not environmental’….
‘Do not see any evidence’…
He proceeded to take a thorough 60 minute case history. As we discussed our family history, I started to relax; somehow having the medical model finally listen to our story seemed to be relief in and of itself. But then, we had to wait another 45 minutes before the geneticist came in to see us. At some point I said to my husband, "If there is no evidence of biological component here… why are they wasting our time?"
Both kids were restless, hungry, and ready to bolt as the door opened. "Hi, Mr. and Mrs. Richardson…. I am ‘Dr. Geneticist’…. why do you think you’re here today?" Again, I explained what I knew of the deletion and his reply shocked me, "Over 80% of the time I can look at a child’s profile and determine the cause of the autism. We don’t see any of those indications with your daughter’s case; however, even though we know that autism is biological, we haven’t been able to know precisely where it is coming from. We are doing continued research to determine how it is biological and which specific gene it resides on."
WHAT?!? How can the geneticist say that there is autism is 80% biological/genetic but not have scientific evidence where the ‘autism code’ resides?
I craved validation, "If you are not finding any biological component linked to my child’s condition, is it safe to say that her condition is related to environmental toxins?"
Prepare yourself for what we heard!
"Some individuals are blaming environmental factors. I have not seen enough evidence that indicates that this could be valid…. There is no link between autism and environmental toxins." He continued to discredit the alternative venues of treating autism like chelating, GFCF diets, and other DAN! Doctor protocols. He even went as far as to state, "Chelation is killing kids while the people recommending it are making gobs of money."
I couldn’t believe my ears, but then again, his science and research is funded through this paradigm (psst…. Guess who’s making gobs of money too?). But to outright attack it befuddled me. I admit I question medical efficacy, but I also invite debate so that we might learn more about both approaches. It is when they find unison that maybe, just maybe, we will begin to progress towards finding a cause and more importantly find a cure.
Many are making ‘gobs’ of money off our children’s deficits from both paradigms. But, right now, my reality is spent in the sleepless nights wondering how we are going to pay for the co-pays, huge deductible, and the portion of the bills that the insurance company hasn’t deemed medically necessary.
The thousands of dollars in bills that we have accrued in the past four months is money that could have been utilized in a much more productive manner. The inconclusive tests results, countless appointments where the physician told us we are already doing everything they’d recommend and the referrals to additional hospital/medical services have racked up a bill and wasted valuable time that could have been utilized towards the recovery of my daughter’s autism.
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