What I've been made aware of most during this first week is that the world of autism is hugely divided. I've been watching arguments on Facebook and the blogosphere, I even made the mistake of participating in one or two conversations where I dared express an opinion different than the herd.
Definitely not a good idea.
I am no stranger to arguing, but it's almost impossible to have a good debate in the world of autism. It's a mysterious world. We don't know for sure what's causing it or what to do about it but man, we certainly do know who's absolutely wrong.
It's irritating, but the most irritating thing is how, even though I know how divided that world is, how I know there is absolutely no point in even starting the debate in the first place, how even with how well I know that, that sometimes I make the choice to participate in what is really a huge waste of time and energy.
I'll work on that.
This year though, I have noticed a very definite theme in just about everything I've read. What I've seen most prominently is people insisting that they are not interested in judging other people's views or choices regarding autism but yet through creative writing and passive-aggressiveness (and sometimes assertive aggressiveness) they go right on ahead and belittle someone else's views or choices after insisting that they are not interested in that. Saying things like, they are not going to comment about the ridiculousness of the whole blue thing (that's Autism Speaks light it up blue campaign) or that if people want to continue to focus and operate solely on their own situation and not doing anything to change things, than apathy is their choice.
I don't squarely fall into any one autism camp and as time goes on, I continue to think that is a good thing. I am not ruling a lot of things out (except that vaccines cause autism). I like what neurodiversity has to say, that autism is about acceptance and not about disability but I also recognize that many many people are denied necessary services and therapies and other aides which could really enhance their own lives and the lives of their families, caregivers and people around them. I am alarmed by the numbers coming out of autism and although I do think some of that is accounted for through better diagnostic tools and techniques, I do think those numbers are alarming and we need research and funding to find out the causes and dare I say prevention and cure for autism. I don't subscribe to the diets or biomed, but if my child were suffering medical problems related to their autism, I would probably know more about it and might even try some of it.
But, I don't subscribe to any of these ways of thinking hook, line and sinker. Because my daughter is being helped, she is progressing and all in all, she is doing well, she's learning, she's living her life, she is not moving from one crisis to another. I am so grateful for that, because I know that despite her challenges, we are lucky and we are blessed.
I am not the world's foremost authority on autism and I don't blog to be considered some kind of expert. I share our experiences because it helps me to do so, it helps me to process my daughter's situation, it's a comfort to me and it helps me to get some perspective on the situation.
This is what I know about autism:
- Autism looks different on everyone who has a diagnosis. Therefore, because of that, not everyone's treatment is the same either.
- Many people need access and resources to get essential services, whether that is medical intervention, therapeutic measures or educational support.
- We don't know exactly what causes autism and we need to find that out so that treatments and prevention can be developed to ease the suffering and help those on the autistic spectrum achieve as much as they can.
- Many people, particularly those not personally touched by autism know very little about it and are subject to developing views which don't focus on inclusiveness, tolerance and acceptance.
And my big truth: I love my daughter and as much as I would love to be able to focus my energy on the big picture, she must be my first priority. I am her mom and no one else will fight for her if I don't. Therefore I choose without guilt to focus on the little picture, on her, on helping her develop every day, on helping her to achieve as much as she can, no matter what that ends up looking like.
That's not apathy, that's motherhood. Perhaps it is my version of motherhood and someone else's looks differently, but we have to live our own truth.
I'm living mine.