Lately, I’ve been reflecting on my very own Autism Awareness. You’d think by now, as an autism mom that’s been in the mix for 5 years post diagnosis and 5 years “in denial” or pre-diagnosis, I would have had enough of awareness by now. It’s true – I’m aware. Painfully aware. During the month of April you can find me randomly grumbling, ‘who is not aware of autism by now’? The proportion of 1 in 88 tends to level the playing field when it comes to who knows someone touched by autism. But my awareness – most autism moms’ awareness – did not happen overnight. It was a process that evolved over the years.
First thing you become aware of is that doctors don’t know everything. Really – who DOES know everything? Nobody – but for some reason many of us have been raised to blindly listen to that person wearing the white coat (which has caused me to buy some pretty awful colors from the Clinique counter – but that is completely different story). The “doctor is not automatically correct” lesson is one I needed to keep re-learning over and over and over until I FINALLY got it. It’s a complete paradigm shift. With that paradigm shift comes some hard realities. The biggest being “you are on your own”. Seriously – you need to sift through those exhilarating PubMed articles yourself at midnight. Guess what I am also AWARE of? Most doctors do not want to read any PubMed articles you pass onto them that may be able to answer some questions about your child’s health. Oops.
But let’s not pick on poor doctors. It’s not limited just to them. It goes beyond the exam room and extends to therapists, teachers, phlebotomists, etc. And every single time you realize that an important person in your life does not know everything there is to know on the subject which you count on them to know everything about ~~ well, that kind of screws with how you get things done. More and more falls on your shoulders. But guess what you find out about yourself…
You become AWARE that YOU know NOTHING. Yep, that’s the second thing you learn. Hey, buck up. This just means everything you USED to know for certain is almost worthless. As I walk down this road of autism awareness I come to terms with all those facts I held sacred and true, are no longer so. The air isn’t getting cleaner? Flouride isn’t necessarily good for you? Ketchup isn’t just tomatoes? Our government isn’t protecting us? That Rhogam shot was preserved with thimerosal? Profits are more important that safety? Money buys votes. Companies rule our nation. And as your perception of the basics in life shift, your footing becomes unsure. Literally, your world is rocked.
But here’s the third thing you become aware of – you ARE the expert on something. Your family. Your children. Yourself. And professionals – not all, but many – take glee in pointing out that your knowledge is anecdotal. Not valuable. Not important. An anomaly. As I speak up for the value of my expertise, I am aware of how my feelings evolved during these interactions. At first, I felt foolish that I thought I understood something complicated, like biology or science. Then I felt angry that they didn’t listen to me, even when it was clear I understood the nuances of the symptoms and the science quite well. Now, I couldn’t care less if they believe or understand me. If you don’t listen to, believe or understand me – tell me now. I rather have your quick no than your long maybe. I will leave – walk on – and find someone that will listen, believe and work to understand and help me.
Finally, I’m aware that autism makes people uncomfortable – that discomfort goes beyond not knowing how to communicate and behave with our kids. It wakes up their awareness – awareness that something is very wrong in the world; that these kids are sick and in pain; that their family could be next.
Yes, we are aware. You’d have to live under a rock to not be aware of autism.
Please stop spending millions of walk-a-thon dollars every year so people can wear blue on April 2 and help people become aware of some important facts about Autism.
Make people aware that:
Autism can kill
Autism can be prevented
Autism is neurobiological
Autism can bankrupt a family
Autism can bankrupt a nation when 1 in 88 grows up and needs “forever care”
Autism can be reversed
Spread hope – it’s way more infectious than Hepatitis B.
And Merck hasn’t made a vaccine for it.