Wednesday, July 20, 2011

The Scary "A" word

You know the book the Scarlet Letter? Well, guess what, if every child diagnosed with an Autism Spectrum Disorder walked around with a Giant "A" on their chest - I think people's jaws would drop. We've all been educated by the media of what "classic autism" looks like (ex: Rainman) and I must say, NBC's Parenthood is doing a great job of bringing Asperger's (very high functioning autism with certain characteristics) into the public's eye. But, I find myself thinking, where do my girls fit in with these pictures?

The truth is, the don't. But they have Autism Spectrum Disorder. Both were tested, by 2 different organizations, and both had a resulting diagnosis of PDD-NOS. In layman's terms it means they have enough autistic characteristics but don't fit into any of the other categories. According to Molly's doctor, fairly soon the DSM (diagnostic and Statistical Manual of Mental Disorders) will release another update. The confusing sub-classes of Autism such as PDD-NOS will be taken out and all will be classified as Autism Spectrum Disorders.

We met with Molly's doctors yesterday up in Boston. Molly was a gem. She was polite, she coped with all the traffic "jelly" as my father has taught her to say and even found some "traffic peanut butter". She observed the red roofs and the river and asked if we were close to China. Molly had an hour and a half development appointment, a half hour neuro appointment and then had to have blood work done. She's been complaining of belly pain, and with her high pain threshold and usual lack of complaint, we thought it best to test her pancreatic functions as well as her liver, depakote level, CBC and the rest of the routine set. We'll see what that says. The phlebotomy techs were blown away by Molly. She sat in the chair extended her arm, didn't make a peep. They putt on the tourniquet, and cleaned her arm. She looks at them, says "I'm ready" I say "like a statue Molly" she holds still and blows out her birthday candle as the tech inserts the needle. No tears, no fuss - just awe at the band aid they place in the crook of her arm.

The biggest thing at her appointments yesterday was the doc's decision to remove the provisional from Molly's autism diagnosis and to make her main diagnosis (in combination with seizure disorder) followed by the ADHD and the Dev. coordination disorder. Yikes - right? It's not that I didn't see it coming. I know Molly's play skills are very immature, her eye contact difficult to obtain, her attention in left field, her days driven by routine, her speech patterns questionable and her desire to retreat into technology high - but it still takes a minute to digest that we are going with the official diagnosis.

Over the years we've been able to process all of this and we know Molly is so much more then a diagnosis. She's a complex kid both medically and developmentally. She doesn't fit into a mold, it's more like she's created a new one and Kennedy fits into a lot of it. Which brings about our interesting conversation. Our neuro is both a practicing epileptologist/pedi neurologist and a researcher. It turns out there is a new technology to sequence something like 20,000 of our genes and pull out all the ones that have atypical variants. They will then be able to look at the variants, and which ones they know cause certain disorders. Then they can compare the similarities in the girl's variants. This is a major step in figuring out what's going on with the girls. We can almost guarantee that it's something genetic and it's something - but since I developed normally (despite my 3 febrile seizures - very common) there isn't a real tie into the girl's development issues.

I feel like I have to learn a brand new language every time we go to a doctor's appointment. It's fascinating but even if we had a reason, it wouldn't change treatment at this point. It may give us an idea of what the future holds, but no certainty. In the back of our minds is always the risk that Molly might lose the decent seizure control she has or that Kennedy could start having seizures. And so, we embrace the "A" word, and like Lord Voldemort, we say it out loud - AUTISM. It doesn't seem so scary any more. You see, it's still just Molly and Kennedy. Two little princesses trying their hardest in this world!

photo by Athina Loveland Photography


  1. Regardless of diagnosis, both Molly and Kennedy are GREAT kids! And they have the bestest parents on the planet! Much love to you guys! Well written :) <3

  2. Very well written. I teach 1st grade so I know the "A" word can be scary for parents. It's refreshing to hear a perspective like yours. Calm, understanding, and knowing that it's still your little girl. :-)

  3. Amanda,

    You've inspired me with your writing to post more in my own Blog. If you're interested it's:

    ~Anne :-)