The very powerful and the very stupid have one thing in common. Instead of altering their views to fit the facts, they alter the facts to fit their views…which can be very uncomfortable if you happen to be one of the facts that needs altering.
~ Doctor Who
There’s simply too much to write this morning. There are too many stories. Too many moments – small ones, big ones, even really big small ones – to try to wedge into a single post.
I still haven’t even finished the story about our awful visit to the neurologist. I told you about the resident who didn’t bother to read the reams of information we’d provided, but I never got to the part where the 103 year-old doctor breezed into the room, asked absurd questions to which he’d already decided the answers and made it pretty clear in thirty seconds or less that the last thing he’d read about autism was Leo Kanner’s paper back in 1943.
Let’s spend some time on this one, shall we?
Playing the God complex for all it was worth, the good doctor decided to tell us that Brooke was ‘much closer to the Asperger’s side of it’ because ‘she has functional communication’ – as evidenced by the fact that when he asked her what she was doing on the iPad she’d answered, ‘Making a cookie.’ and well, that was enough for him.
He continued to rattle on about her savant-like splinter skills (which, in our preceding thirty-second question and answer session I’d made pretty clear that she doesn’t have or that we, at least have not yet discovered) and how they would compensate for her challenges.
If we spent another thirty seconds together, I’m fairly certain he would have dropped a box of toothpicks on the floor and then suggested that we head to Vegas to pull one over on the casinos.
There came a point where I very seriously contemplated asking Luau to take the girls out of the room so that I could tell Dr I Am Qualified To Tell You Everything You Need To Know About Your Daughter’s Developmental Trajectory Even Though I Know Nothing About Her where he could go with his desperately inappropriate assessment.
But I didn’t.
In the moment, it was (or felt) painfully obvious that nothing was going to change this man and his one-size-fits-all view of autism. And after a very, very long week, I wasn’t going to bang my head against the wall for nothing but a headache.
Our kids are as individual as – well, kids. They come in all shapes and sizes and color and flavors. They may share some common characteristics and they may often struggle with some common challenges, but they are not the same. Autism is an absurdly broad umbrella. I’ve said it time and again, Autism is one word, but there is no one autism. It is not an easy thing to grasp.
I spent last night with Geri Dawson, Autism Speaks Chief Science Officer (more on that another day, I promise), and I will tell you, the science of autism alone is overwhelming. When we ask doctors to educate themselves on the autism spectrum, we’re asking a lot. Dr I Am Qualified To Tell You Everything You Need To Know About Your Daughter’s Developmental Trajectory Even Though I Know Nothing About Her has been practicing medicine a long time. And suddenly here we are. An entirely new population with a disorder that even we can’t really explain.
So what do we do? We pick our spots. We find the doctors that we CAN educate. We talk to those who will be the ones in the lab coats in years to come. One by one, we tell them who our children are. We let our kids – as they always do – lead the way.
Just before leaving the room, Dr I Am Qualified To Tell You Everything You Need To Know About Your Daughter’s Developmental Trajectory Even Though I Know Nothing About Her made one final decree. With just as much authoritative bluster as he’d displayed throughout our brief visit, he said, “You’ve obviously done a LOT of work. You’re doing very well with her.”
And I had to admit it. Perhaps he was more perceptive than I’d thought.